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Novo flags FDA hemophilia review extension tied to manufacturing site corrections

I'm Fine with blood brother Reid Morgan

Fri, 09 Oct 2026 07:00:00 +0000

On the next episode of BloodStream, we're asking two big questions: who gets missed, and what happens when the story you've been living starts to change?

Ranvitha Chirumamilla joins us to explore how her own experience with iron-deficiency anemia sparked an interest in women with bleeding disorders and a bigger question: when factor levels don't raise enough concern, who might be getting missed?

And our blood brother Reid Morgan is back for I'm Fine! A handful of years after sharing his story with us publicly for the first time, Reid reflects on what "I'm fine" has meant to him and what happens when an illness that has shaped so much of your identity starts to feel like less of the story.

So grab your headphones and join Ranvitha and Reid for two thoughtful, very different conversations about being seen, being heard, and figuring out who we are along the way.

Show Notes:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

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Platelet Disorders Support Association

Tim Stowers makes history & PDSA CEO Caroline Kruse!

Fri, 25 Sep 2026 07:00:00 +0000

What does it take to make history? And what does it mean to make sure a community's story gets heard?

On the latest episode of BloodStream, we're diving into both. Tim Stowers, fellow blood brother and history-making Channel swimmer, joins our hosts with his sister Vanessa and nephew Elias to share the story behind his incredible open-water swim.

Then, in honor of ITP Awareness Month, Caroline Kruse, CEO & President of the Platelet Disorders Support Association, joins us to talk about ITP, the platelet disorders community, and the stories that deserve a bigger spotlight.

Show Notes:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Are Clinical Trials For Me?

Fri, 11 Sep 2026 07:00:00 +0000

Would you participate in a clinical trial?

On the latest episode of BloodStream, Patrick and Amy explore the personal decisions behind research participation.

Kevin Finkle joins the I'm Fine segment to share his experience participating in multiple clinical studies and what has shaped his decision to keep getting involved. Later, Benny Sorensen, MD, PhD, CEO of Hemab Therapeutics, offers a look at the role patients play in moving research forward and why asking questions matters.

Whether you've participated in research, are considering a study, or have simply wondered, "Are clinical trials for me?" this episode is for you.

Show Notes:

The Bleeding Edge

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

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Introducing: Movers & Shakers in Rare!

Fri, 28 Aug 2026 07:00:00 +0000

What does it take to create a more connected rare disease community?

On the latest episode of BloodStream, Gorana Dasic of Kedrion Biopharma is featured on Movers & Shakers of Rare, and Archit Gupta from Zebra for Care joins Patrick James Lynch and Amy Board to explore the ideas, innovations, and collaborations helping create a more connected experience for patients and families.

Archit Gupta from Zebra for Care joins the conversation to discuss a new model for supporting patients and building resources that meet people where they are in their healthcare journey.

From advocacy and innovation to new approaches in care, this episode highlights the people working to make the rare disease experience more connected, informed, and patient-focused.

Show Notes:

Zebra for Care

Movers & Shakers in Rare

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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The Jonathan James episode!

Fri, 21 Aug 2026 07:00:00 +0000

Living with a bleeding disorder can feel isolating, but finding people who truly understand your experience can change everything.

On the latest episode of BloodStream, Patrick James Lynch and Amy Board sit down with Jonathan James, founder and CEO of Hope Charities, to explore how connection, community, and shared experiences can make a lasting difference for patients and families. Jonathan shares the story behind Hope Charities, the relationships that inspired its mission, and why creating spaces where people feel seen and supported matters just as much as the programs themselves.

Whether you're living with a bleeding disorder, caring for someone who is, or simply looking for a reminder of the power of community, this conversation is one you won't want to miss.

Show Notes:

Hope for Charities

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Chris Bombardier returns to BloodStream!

Fri, 14 Aug 2026 07:00:00 +0000

Chris Bombardier is back on the podcast!

On the latest episode of BloodStream, Chris returns for another Zebra for Care conversation, sharing why awareness, advocacy, and making sure people living with bleeding disorders feel seen and supported matters now more than ever.

Patrick James Lynch and Amy Board also reflect on the conversations and connections shaping this year's Bleeding Disorders Conference (BDC), sharing what they hope to learn and bring back to patients and families.

In the I'm Fine segment, Carrera Christman opens up about the pressure of always being the strong one and how she learned that asking for help is a strength. As an advocate, community leader, and member of the National Youth Leadership Institute, Carrera explores resilience, vulnerability, and the power of saying, "I'm not fine."

From community connection to honest conversations about mental health, this episode is a reminder that no one has to navigate their journey alone.

Show Notes:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

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visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI

Supporting Hemophilia Care Transitions: Insights from a Social Worker

Fri, 31 Jul 2026 16:19:00 +0000

Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI

#HYMPAVZISponsored Mosi Williams, PsyD, lives with hemophilia and has served in

the Bleeding Disorders Community for the past 30 years. He is currently a Licensed

Clinical Social Worker for the UCSF Adult Hemophilia Treatment Center.

Mosi joins Patrick to explore the evolving treatment landscape and the anxiety that

critical moments that shape life with hemophilia—like going back to school, starting a

new job, or planning a wedding—can bring, and how they can prompt deeper

consideration of a treatment change. We'll provide listeners with the latest on HYMPAVZI (marstacimab-hncq) and highlight the value of shared decision-making.

HYMPAVZI may cause serious side effects, including blood clots (thromboembolic

events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your

arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and

additional safety information visit www.HYMPAVZI.com.

This post is directed to a U.S. audience and may not be suitable outside of the U.S. This

video is intended to be viewed as it was originally produced in partnership with Pfizer.

Remember, this content is for educational purposes only and does not replace

discussions with a healthcare provider.

PP-HYM-USA-1290

Show Notes:

For safety information

For information on how to navigate your treatment journey, visit the Shared Decision-

making Guide: https://webfiles.pfizer.com/HYM-Shared-Decision

Listen and Subscribe where you get your podcasts! #Hemophilia

IMPORTANT SAFETY INFORMATION

Important: Before you start using HYMPAVZI, it is very important to talk to your healthcare provider about using factor VIII and factor IX products or "bypassing agents" (products that help blood clot but work in a different way than HYMPAVZI).

Your healthcare provider may prescribe factor VIII or factor IX medicines or bypassing agents to treat episodes of breakthrough bleeding during your treatment with HYMPAVZI. Carefully follow your healthcare provider's instructions regarding when to use these medicines and the prescribed dose during your treatment with HYMPAVZI. Do not use additional doses of HYMPAVZI to treat breakthrough bleeds.

Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you:

have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery.
have a severe short-term (acute) illness such as an infection or injury.
have been told that you have a risk for blood clots.
are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby.

Females who are able to become pregnant:

Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI.
Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI.
Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI.
are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk.

Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away.

What are the possible side effects of HYMPAVZI?

HYMPAVZI may cause serious side effects, including:

blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots:
swelling or pain in your arms or legs
redness or discoloration in your arms or legs
shortness of breath
pain in chest or upper back
fast heart rate
cough up blood
feeling faint
headache
numbness in your face
eye pain or swelling
trouble seeing
allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction:

swelling of your face, lips, mouth, or tongue
trouble breathing
wheezing
dizziness or fainting
fast heartbeat or pounding in your chest
sweating

The most common side effects of HYMPAVZI include:

swelling, hardening, redness, bruising, bleeding, and pain at injection site
headache
fever
joint pain
diarrhea
itching
rash

These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

What is HYMPAVZI?

HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with:

hemophilia A with or without factor VIII inhibitors, or
hemophilia B with or without factor IX inhibitors.

It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI).

It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.

Hemophilia B and Telemedicine with Zebra For Care!

Fri, 24 Jul 2026 07:00:00 +0000

Could new research change the way hemophilia B carriers are cared for during pregnancy?

On this episode of BloodStream, Patrick and Amy explore emerging research that challenges long-held assumptions about factor IX levels during pregnancy and what it could mean for patients and providers. Nathan Mermilliod shares his experience living with hemophilia B, and Dr. Steven Fein discusses the evolving landscape of telemedicine in partnership with Zebra for Care.

From new discoveries to lived experiences, this episode highlights the stories and science moving the bleeding disorders community forward.

Show Notes:

Contrary to current guidance, antenatal factor IX levels increase in female carriers of hemophilia B

Hope for Hemophilia

Zebra Care

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Subscribe:

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Navigating the Hemophilia Journey: A Conversation with Dr. Singleton and Peter Fischer

Fri, 17 Jul 2026 18:54:00 +0000

Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI

On this episode of BloodStream, Patrick facilitates a conversation between Peter, who is living with hemophilia A, and Dr. Tammuella Chrisentery-Singleton, a board-certified hematologist and Chief Science Officer (CSO) for The American Thrombosis and Hemostasis Network (ATHN), to explore the shared decision-making process and why it matters. We'll provide listeners with the latest on HYMPAVZI (marstacimab-hncq) and highlight the value of shared decision-making.

HYMPAVZI may cause serious side effects, including blood clots (thromboembolic events).

HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and additional safety information visit HYMPAVZI.com.

This post is directed to a U.S. audience and may not be suitable outside of the U.S. This video is intended to be viewed as it was originally produced in partnership with Pfizer. Remember, this content is for educational purposes only and does not replace discussions with a healthcare provider.

PP-HYM-USA-1115

Show Notes:

For safety information visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI

For information on how to navigate your treatment journey, visit the Shared Decision-making Guide here.

Listen and subscribe where you get your podcasts! #Hemophilia

IMPORTANT SAFETY INFORMATION

Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you:

have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery.
have a severe short-term (acute) illness such as an infection or injury.
have been told that you have a risk for blood clots.
are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby.

Females who are able to become pregnant:

Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI.
Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI.
Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI.
are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk.

Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away.

What are the possible side effects of HYMPAVZI? HYMPAVZI may cause serious side effects, including:

blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots:
swelling or pain in your arms or legs
redness or discoloration in your arms or legs
shortness of breath
pain in chest or upper back
fast heart rate
cough up blood
feeling faint
headache
numbness in your face
eye pain or swelling
trouble seeing
allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction:
swelling of your face, lips, mouth, or tongue
trouble breathing
wheezing
dizziness or fainting
fast heartbeat or pounding in your chest
sweating

The most common side effects of HYMPAVZI include:

swelling, hardening, redness, bruising, bleeding, and pain at injection site
headache
fever
joint pain
diarrhea
itching
rash

These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

What is HYMPAVZI?

HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with:

hemophilia A with or without factor VIII inhibitors, or
hemophilia B with or without factor IX inhibitors.

It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI).

It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.

Another Barb & Jeff Interview with Gary McLain

Fri, 10 Jul 2026 07:00:00 +0000

On the latest episode of BloodStream, Patrick sits down with Cassie Miller, a parent raising two daughters with von Willebrand disease. Together, they talk about staying solution-focused, trusting your instincts, and advocating when the path forward isn't clear.

Jeff and Barb return to the podcast with therapist Gary McClain for a thoughtful conversation about the emotional side of living with a rare disease, exploring resilience, difficult emotions, and how we support ourselves and one another.

Show Notes:

LevelsMatter.com

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

Subscribe:

Connect with BloodStream Media:

How the Patient Perspective Led to a Hemophilia Medical Breakthrough

Wed, 08 Jul 2026 07:00:00 +0000

Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI.

#HYMPAVZISponsored William S. Somers, Ph.D., was a biotherapeutics research and development leader with more than 30 years of experience across biotechnology and pharmaceutical organizations, including Pfizer.

As a scientist living with hemophilia, Dr. Somers played a key role in driving the patient-centric and purposeful design of HYMPAVZI (marstacimab-hncq). This episode will explore how the patient perspective influenced the scientific journey, with a special focus on Will's research and why it was personally important for him to bring HYMPAVZI to people with hemophilia.

HYMPAVZI may cause serious side effects, including blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. To learn more about this risk and additional safety information visit HYMPAVZI.com.

PP-HYM-USA-1267

Show Notes:

For safety information visit: https://labeling.pfizer.com/ShowLabeling.aspx?id=20916&Section=PPI

For information on how to navigate your treatment journey, visit the Shared Decision-making Guide here.

Listen and subscribe where you get your podcasts! #Hemophilia

IMPORTANT SAFETY INFORMATION

Before using HYMPAVZI, tell your healthcare provider about all of your medical conditions, including if you:

have a planned surgery. Your healthcare provider may stop treatment with HYMPAVZI before your surgery. Talk to your healthcare provider about when to stop using HYMPAVZI and when to start it again if you have a planned surgery.
have a severe short-term (acute) illness such as an infection or injury.
have been told that you have a risk for blood clots.
are pregnant or plan to become pregnant. HYMPAVZI may harm your unborn baby.

Females who are able to become pregnant:

Your healthcare provider will do a pregnancy test before you start your treatment with HYMPAVZI.
Use effective birth control (contraception) during treatment with HYMPAVZI and for at least 2 months after the last dose of HYMPAVZI.
Tell your healthcare provider right away if you become pregnant or think that you may be pregnant during treatment with HYMPAVZI.
are breastfeeding or plan to breastfeed. It is not known if HYMPAVZI passes into your breast milk.

Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

If you inject too much HYMPAVZI, call your healthcare provider or the Poison Help Line at 1-800-222-1222 or go to the nearest hospital emergency room right away.

What are the possible side effects of HYMPAVZI? HYMPAVZI may cause serious side effects, including:

blood clots (thromboembolic events). HYMPAVZI may increase the risk for your blood to clot in blood vessels in your arm, leg, lung, or head, which can be life-threatening. Blood clots have happened in people using HYMPAVZI. You may have an increased risk of blood clots if you have certain risk factors. Stop using HYMPAVZI and get medical help right away if you develop any of these signs or symptoms of blood clots:
swelling or pain in your arms or legs
redness or discoloration in your arms or legs
shortness of breath
pain in chest or upper back
fast heart rate
cough up blood
feeling faint
headache
numbness in your face
eye pain or swelling
trouble seeing

allergic reactions. HYMPAVZI may cause allergic reactions, including rash and itching. Stop using HYMPAVZI and get medical help right away if you develop any of the following symptoms of a severe allergic reaction:
swelling of your face, lips, mouth, or tongue
trouble breathing
wheezing
dizziness or fainting
fast heartbeat or pounding in your chest
sweating

The most common side effects of HYMPAVZI include:

swelling, hardening, redness, bruising, bleeding, and pain at injection site
headache
fever
joint pain
diarrhea
itching
rash

These are not all the possible side effects of HYMPAVZI. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

What is HYMPAVZI?

HYMPAVZI is a prescription medicine used regularly to prevent or reduce the frequency of bleeding episodes in adults and children 6 years of age and older with:

hemophilia A with or without factor VIII inhibitors, or
hemophilia B with or without factor IX inhibitors.

It is not known if HYMPAVZI is safe and effective in people receiving ongoing Immune Tolerance Induction (ITI).

It is not known if HYMPAVZI is safe and effective in children younger than 6 years of age.

FLOW Podcast Has a New Look!

Fri, 26 Jun 2026 14:43:00 +0000

On the latest episode of BloodStream, Patrick and Amy introduce The Flow podcast rebrand, preview our upcoming Hemophilia B series with Zebra for Care, and share the latest hot tips for sending your kids to camp.

Listen now and subscribe to BloodStream wherever you get your podcasts so you do not miss what is coming next.

Show Notes:

Project Elevate Her

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Subscribe:

Connect with BloodStream Media:

A candid convo with HTC nurse practitioner, Joe Stanco

Fri, 12 Jun 2026 07:00:00 +0000

The FED UP Act is headed to Congress and could reshape how women and girls with bleeding disorders are diagnosed, treated, and supported!

On the latest episode of BloodStream, Amy and Patrick sit down with Joe Stanco, HTC Family Nurse Practitioner and founder of the Hemostasis and Thrombosis Nursing Association, for a candid conversation about today's hemophilia care landscape and where it is headed next. We also unpack what this bipartisan legislation could mean for access, research, education, and equity in care.

In this week's I'm Fine segment, we explore the emotional weight of caregiving, the pressure to always show up for others, and what happens when your own care starts to fall to the bottom of the list.

Advocacy, science, and lived experience all in one place. Listen now and subscribe to BloodStream Podcast wherever you get your shows.

Show Notes:

FED UP Act

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy

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Climbing the Seven Summits to raise awareness?!

Fri, 22 May 2026 07:00:00 +0000

What does it look like to raise awareness from the top of the world?

On the latest episode of BloodStream, Maia Meier joins our beloved hosts, Patrick and Amy, to talk about her mission to climb the Seven Summits through Project Elevate Her and bring visibility to women and girls living with bleeding disorders.

From high-altitude expeditions to the everyday realities of advocacy, the conversation explores what it means to take up space in places where women with bleeding disorders have too often gone unseen.

Listen now and subscribe to BloodStream Podcast wherever you get your shows.

Show Notes:

Project Elevate Her

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Subscribe:

Connect with BloodStream Media:

Lived experience across generations of bleeding disorders

Fri, 08 May 2026 07:00:00 +0000

On the latest episode of BloodStream, we look at what is really underneath the words "I'm fine" and who it is serving to keep things that way.

In I'm Fine, a family story across generations with bleeding disorders traces what has changed, what has not, and how honesty can begin to break cycles of silence that have long been passed down. What emerges is a closer look at resilience, inheritance, and the stories we are taught to minimize.

We close out our plasma donation mini-series with donor Carver, highlighting the people behind every donation and the quiet consistency that keeps treatment possible.

Plasma, perspective, and the moments where silence finally gives way to something more honest. Listen now and subscribe to BloodStream Podcast wherever you get your shows.

Show Notes:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

Subscribe:

Connect with BloodStream Media:

NY State Senator Joseph Addabbo steps up for bleeding disorders

Plasma donors, RARE BLOOD, and advocacy wins

Fri, 24 Apr 2026 07:00:00 +0000

On this episode of BloodStream—our plasma donation series continues with a powerful second installment featuring donor Hannah and the story behind what it really means to give.

We've also got a packed lineup: a look at momentum building at the WFH World Congress, policy progress led by State Senator Joseph Addabbo supporting families with rare disorders, and new momentum in storytelling as Sanofi backs additional documentaries spotlighting rare blood conditions.

Plus, we dig into the bigger picture—how bleeding disorders impact entire families, the role creativity plays when navigating physical limitations, and the isolation that can come with not knowing someone who shares your experience.

And don't miss a spotlight on The Red Ink Project and their virtual screening of Dismissed, a film bringing long-overdue visibility to women and girls with bleeding disorders.

All that and more—this is BloodStream.

Show Notes:

Sanofi backs 2 more documentary films about rare blood disorders

theredinkproject.org

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Subscribe:

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What happened to HEMGENIX!? An update on gene therapy.

Fri, 10 Apr 2026 07:00:00 +0000

CSL Behring just announced a global "stockout" of Hemgenix—what's happening, and what does it mean for patients? On this episode of BloodStream Podcast, we break down the news, launch our mini-series on plasma donation, and hear from Thomas Savage in our I'm Fine segment, sharing the highs, the lows, and the reality of living with a severe bleeding disorder.

Pain, perseverance, and the lessons learned along the way give a rare, unfiltered glimpse into life behind the headlines—reminding us all that every treatment, every donation, and every day matters.

Show Notes:

I'm Fine is presented by @SanofiUS

#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Subscribe:

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Understanding Hemophilia A & B with Inhibitors: SEVENFACT in Focus

Fri, 03 Apr 2026 07:00:00 +0000

In this special partnered episode of the BloodStream Podcast, hosts Patrick James Lynch and Amy Board speak with hematologist Dr. Tami Singleton about hemophilia A and B with inhibitors, a complex condition that changes how bleeding episodes are treated. Dr. Singleton explains what inhibitors are, why they develop, and how they impact clotting and everyday life for patients and families. The conversation also explores SEVENFACT, a recombinant factor VIIa bypassing agent, including how it works and what patients should know about dosing and treatment planning.

Click here to learn more about SEVENFACT.

100 Years of vWD w/ Dr. Nathan Connell

Fri, 27 Mar 2026 07:00:00 +0000

This year marks 100 years since von Willebrand disease (vWD) was first described, and on this episode of BloodStream we take a closer look at how far the field has come.

Our beloved hosts, Patrick and Amy happily welcome Dr. Nathan Connell, hematologist and leading expert in bleeding disorders, for a conversation about the past, present, and future of vWD. Together they explore how our understanding of the condition has evolved since its discovery, the challenges that remain in diagnosis and care, and why awareness still matters for the millions of people worldwide living with vWD.

From early clinical observations to modern treatment approaches, Dr. Connell reflects on the milestones that have shaped care over the last century—and what the next hundred years could hold.

Plus, a preview of what's coming next on BloodStream as we approach World Hemophilia Day.

Show Notes:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Subscribe:

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BioMarin pulls hemophilia gene therapy Roctavian

Psychosocial support and bye bye, BioMarin

Fri, 13 Mar 2026 07:00:00 +0000

Bleeding disorders aren't just medical conditions — they're lived experiences shaped by resilience, community, and support. On this episode of BloodStream Podcast, Patrick James Lynch sits down with the WFH working group to explore why psychosocial care matters just as much as medicine and how human connections help people thrive.

Rocky Williams joins to share the power of positivity and what it truly means to be more than "fine," inspiring the bleeding disorders community to dream bigger, aim higher, and embrace life fully. We also break down a major shift in gene therapy: BioMarin's decision to pull Roctavian from the market, what it means for patients, and why preserving critical clinical data is essential for ongoing research and safety.

Tune in for a conversation that blends science, mindset, and community — because living with bleeding disorders is about more than treatments, it's about life itself.

Show Notes:

WFH Gene Therapy Registry

LevelsMatter.com

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy

Subscribe:

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Jeff & Barb with Connie Montgomery!

Fri, 27 Feb 2026 08:00:00 +0000

On this episode of BloodStream, we're thrilled to sit down with Connie Montgomery alongside Jeff and Barb for a warm, wide-ranging conversation grounded in lived experience and deep community roots. Together, they reflect on the moments that shape advocacy, the evolution of the bleeding disorders space, and the power of staying connected to one another.

Plus, a nod to Rare Disease Day, a bit of BloodStream banter, and a preview of what's ahead.

Tune in, share with your community, and as always—take self-care of yourself.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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A preview of 2026 World Congress with Dr. Glenn Pierce

Fri, 20 Feb 2026 08:00:00 +0000

On this episode of BloodStream, we get a sneak peek at the 2026 World Congress with Dr. Glenn Pierce, Vice President, Medical at the World Federation of Hemophilia. What conversations are shaping the agenda? Where is the science heading? And how does a global convening like World Congress moves the needle on access, equity, and innovation for people living with bleeding disorders? Dr. Pierce shares why this gathering still matters — and what the community should be watching as 2026 approaches.

Plus, in I'm Fine, we sit down with Anthony, a performer and educator living with a bleeding disorder. From invisible disability to grieving the life you imagined, it's a candid conversation about ambition, identity, and learning to stop blaming yourself for what you can't control.

Global outlook. Personal reckoning. Classic BloodStream.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

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ASH 2025 Highlights

Fri, 13 Feb 2026 08:00:00 +0000

ASH 2025 brought a wave of new data — and on this episode, we're digging into what stood out.

Patrick and Amy welcome Dr. Akshat Jain to talk through the research, the momentum in hematology, and the conversations coming out of this year's meeting. What's generating excitement? What feels meaningful? And what could shape care moving forward for the bleeding disorders community?

If ASH sets the tone for the year ahead, this is your chance to hear how it's sounding.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Amy's History in Hemophilia

Fri, 23 Jan 2026 08:00:00 +0000

Patrick and Amy sit down to hear her story—how she first got involved in the bleeding disorders community back in 2003, and how patient advocacy became her passion. Along the way, they share laughs about their unexpected pasts as actors and the moments that shaped their paths.

Also on this episode of BloodStream, our hosts also look back on the year in gene therapy, spotlighting patients, clinicians, and researchers who are redefining what's possible, including five-year insights from the HOPE-B study in hemophilia B.

This episode is a celebration of hope, trust, and progress—a reminder that hemophilia care isn't just about science, it's about people and the possibilities they create.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

It's a Whole New World brought to you by @CSLBehring.

#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #genetherapy #healthcare #digitalhealth #biotech

Show Notes:

Final Analysis of a Study of Etranacogene Dezaparvovec for Hemophilia B

https://www.nejm.org/doi/full/10.1056/NEJMoa2514332

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to www.hemophiliacommunity.com

Blood Brothers - Part 3

Fri, 26 Dec 2025 08:00:00 +0000

In this special year-end episode of the Bloodstream Podcast, Patrick and guest host Mark Pangilinan conclude their powerful three-part Blood Brother series featuring the voices and stories of men living with bleeding disorders across the country. Together, they explore themes of complicated grief, advocacy, identity, fatherhood, discrimination, and the emotional realities that often go unspoken within the community. Listeners will also hear the latest installment of the Gene Therapy: A Whole New World segment, where Dr. Margaret Ragni and Dr. Richard Lemons break down new long-term data, future technologies, and where gene therapy may be heading next. It's an honest, heartfelt, and hopeful finale that celebrates vulnerability, connection, and the collective strength of the bleeding disorders community.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Gene Therapy Segment

It's a Whole New World brought to you by @CSLBehring.

#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #genetherapy #healthcare #digitalhealth #biotech

Show Notes:

To meet members of the community and to hear more about their hemophilia A journey, head

Final Analysis of a Study of Etranacogene Dezaparvovec for Hemophilia B

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The Stress of Shifting Roles with Cheri Clark

Fri, 19 Dec 2025 08:00:00 +0000

On this episode of BloodStream, Cheri Clark opens up about juggling life as a nurse, patient, caregiver, and board member, all while managing her own health. She shares the pressure of always saying "I'm fine," the moments she's pushed past her limits, and the lessons she's learning about setting boundaries that actually stick. We also hear from Nicole Angeles, reflecting on her second pregnancy with vWD—a very different experience than her first.

Together, their stories offer honest, grounded insights into balancing responsibilities, navigating health challenges, and finding your footing when life keeps shifting.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy

Show Notes:

Rareblooddisorders.com

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to www.hemophiliacommunity.com

Blood Brothers - Part 2

Fri, 12 Dec 2025 08:00:00 +0000

This episode of the Bloodstream Podcast continues the Blood Brother Collaboration, featuring candid conversations among men living with bleeding disorders. Guests share personal stories of resilience, complicated grief, and the importance of community support. The discussion highlights the unique challenges faced across the lifespan, from childhood through aging, and emphasizes the value of open dialogue and mental health awareness. Listeners are encouraged to connect, share, and support one another through the Blood Brotherhood program and broader community resources.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

To meet members of the community and to hear more about their hemophilia A journey, head

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to www.hemophiliacommunity.com

Blood Brothers - Part 1

Fri, 28 Nov 2025 08:00:00 +0000

On this special episode of the Bloodstream Podcast, hosts Patrick James Lynch and Marc Pangilinan kick off a three-part Blood Brother Collaboration, featuring heartfelt stories and insights from men across the bleeding disorders community. The discussion centers on lived experiences, including complicated grief, joining the community, wearing multiple hats, and challenges across the lifespan. Listeners will hear candid conversations about overcoming obstacles, building support networks, and the evolution of treatment and community resources. Tune in for an inspiring and honest look at life with bleeding disorders, and discover valuable resources and support along the way.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

To meet members of the community and to hear more about their hemophilia A journey, head

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I'm Fine is back! Featuring Benjamin Denman

Fri, 21 Nov 2025 08:00:00 +0000

In this episode of BloodStream, we look back at the history of gene therapy and highlight key voices from Portraits of Progress. We also share the story behind I'm Fine, featuring community advocate Benjamin Denman, recently honored at the Hope Gala. Plus, we introduce HFA's new Voice of the Community initiative and how you can get involved in shaping the future of bleeding disorders care and advocacy.

Tune in and join us in reflecting on where we've been, where we are, and where our community is heading next.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.

"I'm Fine" Segment

I'm Fine is presented by @SanofiUS

#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy

Show Notes:

Portraits of Progress: https://www.portraitsofprogress.com/

HFA Voice of Community: https://www.hemophiliafed.org/voice-of-the-community/

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Global Action Network for Sickle Cell and Other Inherited Blood Disorders

The Red Ink Project & Global Action Network for Sickle Cell

Fri, 14 Nov 2025 08:00:00 +0000

This week on BloodStream, we're talking to changemakers. Elsa and Ann Kendall from The Red Ink Project share how they're shifting the story for women and girls in bleeding disorders. And advocate Lanre Tunji-Ajayi joins us to discuss building global networks for sickle cell and other inherited blood disorders. A conversation about voice, visibility, and what it takes to lead.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

Red Ink Project

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https://www.beyondthediagnosis.org/

Beyond the Diagnosis

Fri, 24 Oct 2025 07:00:00 +0000

Art and science collide on this episode of BloodStream Podcast! Hosts Patrick James Lynch and Amy Board bring stories that inspire and inform the bleeding disorders community.

Patty Weltin and the Beyond the Diagnosis exhibit show how artists bring portraits of children with life-altering diseases to life. These works travel to hospitals, medical schools, galleries, and museums, raising awareness and sparking connection.

Hanna sits down with genetic counselor Kaylee Dollarshell to talk gene therapy—the science, the emotions, and the big decisions families face. A real, behind-the-scenes look at navigating this treatment.

Next time: Hear from Else and Ann Kendall of The Red Ink Project, sharing stories that will challenge how you think about patient advocacy.

Don't miss this episode packed with insight, inspiration, and real stories shaping the future of bleeding disorders care.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

https://findageneticcounselor.nsgc.org/?reload=timezone

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Joint Health and Gene Therapy - Live from BDC!

Fri, 17 Oct 2025 07:00:00 +0000

We're live at BDC! Host Amy Board take you straight to the exhibit hall floor, chatting with doctors like Drs. Quon, Sidonio, and Radak, plus patient advocates Collin Johnson and Matt Capsel. From man-on-the-street interviews to a touching story from Greg, this episode reminds us all to run—not walk—towards science.

Join us for real conversations, patient perspectives, and insights on gene therapy, joint health, and life in the bleeding disorders community.

Next up: An inspiring interview with Patty Weltin and the "Beyond the Diagnosis" art exhibit.

Don't miss this insightful, energizing episode that dives into the future of bleeding disorders care.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Channel swimmer (and blood brother!) Tim Stowers

Fri, 10 Oct 2025 07:00:00 +0000

On this episode of BloodStream, hosts Patrick James Lynch and Amy Board share stories of remarkable achievement and progress in bleeding disorders. Hear from Tim Stowers, a severe hemophilia A patient who has completed solo channel swims, as he shares his journey of resilience and determination. Plus, get the latest updates on Star Therapeutics' lead VWD therapy, now entering a pivotal Phase 3 trial, and learn how patients can help shape the first validated VWD quality-of-life assessment tool.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

Star's Pivotal Phase 3 Study (VIVID-6) Initiated:

VGA039 is the first subcutaneous therapy, dosed once monthly, that has the potential to address all types of VWD and all types of bleeds. It has also received Fast Track and orphan drug designation from the United States Food and Drug Administration (FDA). The additional investment announced today supports our continued global clinical expansion as we advance into our pivotal, Phase 3 trial.

Explore clinical trial eligibility: visit THIS WEBSITE

To participate in the first validated VWD quality of life patient-reported outcome tool, please e-mail Judith.Monickaraj@chet.rochester.edu to learn more.

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WHO Guidelines Updated!

Fri, 26 Sep 2025 07:00:00 +0000

On this episode of BloodStream, we explore the World Health Organization's updates to the Essential Medicines List and what they mean for bleeding disorders care. Hemophilia B mom and creator Jesseca Lockie shares her perspective on advocacy and storytelling online, while Domenic and his mom open up about how gene therapy has transformed his daily life. Real stories, important updates, and conversations shaping the bleeding disorders community.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Emerging treatment for vWD?!

Fri, 19 Sep 2025 07:00:00 +0000

Is there a new treatment for von Willebrand Disease on the horizon? This week on BloodStream, we're joined by Jess Swann and Dr. Ben Kim from Star Therapeutics to talk about their promising pipeline and what it could mean for the vWD community. From science to support, they share their commitment to innovation and the people at the heart of it all. Plus, Patrick and Amy catch you up on the latest happenings—including the premiere of Dismissed!

Don't miss this insightful, energizing episode that dives into the future of bleeding disorders care.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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http://www.linkedin.com/in/edward-rogoff-6624366

Patrick's Surgery and Ed Rogoff's book

Fri, 12 Sep 2025 07:00:00 +0000

Edward Rogoff, Blood Brother, NY chapter board member, and author of Scary Diagnosis, joins us on today's BloodStream. We hear the powerful stories behind community tattoos and get an update from PJL on his ankle surgery and recovery. This episode is full of resilience, creativity, and the strength we find in unexpected places.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Gene Therapy Around the World

Fri, 22 Aug 2025 07:00:00 +0000

Do you ever wonder who's actually getting gene therapy around the world? So have we! Dr. Hank Greely from Stanford and Simon Fletcher, a nurse and PhD Candidate from Oxford, break it down in a way that's eye-opening and real. Then stick around for Dr. Radek Kaczmarek's update on the latest game-changing research. Two fascinating chats, one episode, this is BloodStream you don't want to miss!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Actress Sami Rappoport's short film, VIII. Plus Jeff & Barb with Dr. Joanna Davis

Fri, 15 Aug 2025 07:00:00 +0000

What do a heartfelt short film, a Hollywood actress, and a powerful community story all have in common? This week's BloodStream Podcast. Actress Sami Rappoport shares how her grandfather's life with hemophilia inspired her latest project, and Dr. Joanna Davis sits down with Barb Forss and Jeffrey Moualim for a conversation you won't want to miss.

Jeffrey Moualim, Barbara Forss and Joanna Davis, M.D., discussion is in conjunction with CHESFoundation/LadyBugs Program

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Bleeding Disorders Conference preview with NBDF's Phil Gattone

Fri, 08 Aug 2025 07:00:00 +0000

Phil Gattone joins the latest BloodStream Podcast to preview NBDF's upcoming Bleeding Disorders Conference, coming mid-August. Plus, Amy and Patrick take a trip down camp memory lane, sharing summer stories from their days at hemophilia camp. Tune in for a mix of updates and nostalgia.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.

Show Notes:

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Fri, 27 Jun 2025 07:00:00 +0000

New treatment options are here for the hemophilia community! Learn more in Patrick's conversation with Craig Benson and our latest Gene therapy segment that focuses on the psychological impact of gene therapy. Plus, we share news about the Genentech and Spark integration.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Stop the Bleeding!, a retrospective

Fri, 20 Jun 2025 07:00:00 +0000

Stop the Bleeding! is celebrating 14 seasons of using comedy and entertainment to raise awareness and educate about hemophilia and other bleeding disorders. Join creator, director, and star, Patrick James Lynch, in a retrospective with director and writer Jim Fagan as they reminisce about the show's characters and conflicts, and how entertainment & digital media was used to engage, educate, and inspire people with chronic conditions.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Watch the trailer for the latest season!

AWARDS & HONORS

2018 LA Web Fest - Best Premise for a Comedy Series (Winner); Best Cinematography, Best Editing (Nomination)

2017 Imagen Awards - Best Web Series (Nomination)

2017 Brooklyn Web Fest - Best Ensemble (Nomination)

2014 National Hemophilia Foundation - Meritorious Service Award (Winner)

2013 Hemophilia Federation of America - Health & Wellness Award (Winner)

Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.

Show Notes:

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Aging with a Bleeding Disorder

Fri, 13 Jun 2025 07:00:00 +0000

Join us for an episode dedicated to aging with hemophilia, with several stories from our community. We hear from Jeffrey Moualim & Barb Forss, and Patrick sits down with Prisilla Oren, while Hanna chats with Walter Justus. It's a special episode to celebrate the strength of our community.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.

Show Notes:

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NBDF CEO weighs in on current events

Fri, 23 May 2025 07:00:00 +0000

NBDF CEO, Phil Gattone, is back on the show to share his thoughts on the current events happening in our bleeding disorder community. Plus, Hanna speaks with Stanford law professor Dr. Hank Greely and legendary hematologist Dr. Margaret Ragni about how we know when gene therapy is the right choice—and is our system ready to support it? And, an interview with the founder of Hope Runs Red, Breana Sinkfield. All this and more!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.

Show Notes:

Visit Hope Runs Red and watch or share your story!

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Medicaid Cuts and vWD Clinical Trials

Fri, 09 May 2025 07:00:00 +0000

Potential Medicaid cuts are looming that could affect our community. Hear how you can take action! We also have exciting news about a clinical trial for von Willebrand's disease and a special community story from Kayla Klein and her mother, Nancy Rodgers. Plus, Patrick has some fantastic updates from the WFH's Comprehensive Care Summit in Dubai.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Medicaid Cuts - Take Action Today!

Please call or email the offices you visited in March and remind your lawmakers that Medicaid is a lifeline: ask them to reject Medicaid funding cuts and other policies that would reduce coverage and disrupt care. For email, contact the staffer you met with at Washington Days (check your sent mail for the thank you notes). If you no longer have contact information for your lawmakers' offices, you can call the Capitol switchboard at 202.224.3121 and ask them to connect you. Say or email:

I am [calling/emailing] as a member of the bleeding disorders community and as a constituent to ask you to reject cuts to federal Medicaid funding. I am relying on you, as my Senator/Representative in Congress, to protect Medicaid from funding cuts and other policies that would reduce coverage and care. 

Medicaid covers life-sustaining treatment and care for up to one-third of the bleeding disorders community. Without Medicaid, low-income people with bleeding disorders will have no access to the regular care they need to prevent or treat painful, debilitating, and potentially life-threatening bleeding episodes. People will experience preventable health complications – and overall healthcare costs will rise.

Please stand with the bleeding disorders community and so many others who rely on Medicaid, and reject cuts to this program that provides essential coverage to vulnerable individuals across the country.

Hemab Therapeutics Announces Start of Velora Pioneer, a Phase 1/2 Clinical Trial Investigating HMB-002 for the Treatment of Von Willebrand Disease: Press Release

More information about the vWD clinical trial participation

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New Music from Trevor Martin and info about Deliver Us, an upcoming documentary

Fri, 25 Apr 2025 07:00:00 +0000

One of our most stacked episodes in a while, featuring a chat and new music with Blood Brother, Trevor Martin. We also have Dr. Richard Lemon on the latest Gene therapy segment discussing the implications of recent hemophilia B gene therapy data. Plus, Allegra Hill and Kimberly Durdin from the only Black-owned birthing center in LA, and the visionary subjects behind our upcoming documentary Deliver Us. AND NYLI's Shanthi Hegde & Eliza Marie VanZweden! Whew! 😅

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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To learn more about Trevor and hear his music, visit trevormartinmusic.com

To learn more about Trevor Martin's treatment, visit Hemlibra.com

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Shakeup at CDC - What does it mean???

Fri, 11 Apr 2025 07:00:00 +0000

On April 1st, the Administration announced drastic changes and reductions to the federal health programs, one being the Division of Blood Disorders CDC, greatly affecting the bleeding disorders community. To discuss these concerns, we welcome a familiar face to many of you - Johanna Gray, federal policy advisor to NBDF and all-around wonderful human.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The CDC cuts are of particular concern to our community. The Division of Blood Disorders' work traces back to the 1980s' tainted blood crisis, when CDC investigators were the first to discern and warn of HIV's transmissibility through blood and blood products. To this day, the Division serves the bleeding disorders community and the nation at large through its public health surveillance activities – including maintaining a laboratory with blood samples dating back to 1996. The Division also funds the collection of key data on bleeding disorders through its "Community Counts" program, and supports educational outreach to increase patient and provider understanding of hemophilia and its complications. Elimination of the Division, its clinical repository, and its institutional knowledge would be a huge loss for the bleeding disorders community.

WHAT CAN YOU DO?

Call the Capitol switchboard: (202) 224-3121

*Anyone can call this number and get connected with their Senators and Representative.

I am calling as a member of the bleeding disorders community and as a constituent to ask that you protect the federal hemophilia programs at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC's Division of Blood Disorders, where the hemophilia programs are housed. These programs:

Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments.
Provide funding for education and outreach to increase patient and provider understanding of hemophilia.
Help to protect the safety of our nation's blood supply.

I'm very worried about what this means for people with bleeding disorders and our country.

Please work to restore the staffing and activities of the CDC Division of Blood Disorders.

I am relying on you, as my Senator/Representative in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program.

For years, people with hemophilia A waited for a cure, while inhibitor patients were left behind—but now, after setbacks and failed launches of several gene therapies, investors think patients aren't interested. By taking this short survey, you can make your voice heard and show investors that our community still wants a durable gene therapy, but this time for both hemophilia A with or without inhibitors. Take the survey here

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I'm Fine: The Devil You Know

Fri, 04 Apr 2025 07:00:00 +0000

In this special pop-up episode of the Bloodstream Podcast, host Patrick James Lynch discusses the discontinuation of two Takeda bleeding disorder products with Anthea Cherednichenko, Takeda's VP Franchise Head Hematology and Transplant. Additionally, the 'I'm Fine' segment, sponsored by Sanofi, explores why people cling to the notion of being 'fine' and the importance of embracing vulnerability for true resilience.

I'm Fine is presented by @SanofiUS

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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HFA CEO Dan Kelsey & Gene Therapy w Brendan Hayes

Mon, 31 Mar 2025 19:12:00 +0000

HFA Symposium is this weekend, and we have CEO Dan Kelsey on the podcast to tell us all about it! Plus, a gene therapy segment with the fantastic Brendan Hayes about what she's hearing in the community about gene therapy for hemophilia B.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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https://www.surveymonkey.com/r/geneventiv-2

I'm Fine: Honesty & Lies

Fri, 21 Mar 2025 07:00:00 +0000

On this special pop-up episode of the Bloodstream podcast, we're back with another 'I'm Fine' segment, which delves into the complexities of honesty and mental health. This episode features insights from Gabi Flores on the importance of addressing mental and emotional wellbeing, particularly for those managing chronic conditions.

I'm Fine is presented by @SanofiUS

Please share this survey with any friends you have with hemophilia A with or without inhibitors, who will help us educate the investment community on the need for new and better therapies.

$50 gift card to each of the first 50 survey respondents!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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NBDF CEO Phil Gattone + Dr. Nathan Connell on ASH Highlights

Fri, 14 Mar 2025 07:00:00 +0000

Patrick chats with NBDF CEO, Phil Gattone, after his first Washington Days! Plus, Dr. Nathan Connell gives a terrific ASH Recap full of the latest research and development in bleeding disorders and Amy speaks with FLOW co-host, Jessica Richmond about women with bleeding disorders.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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I'm Fine: The First Fracture

Fri, 07 Mar 2025 08:00:00 +0000

On this episode we explore the concept of projecting a façade of being 'fine' while struggling internally, especially within the hemophilia community. Featuring insights from Austin Lerner, the episode delves into the importance of expressing vulnerability, embracing un-fine moments, and fostering open communication to truly address one's challenges.

I'm Fine is presented by @SanofiUS

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Happy Rare Disease Day!

Fri, 28 Feb 2025 08:00:00 +0000

We celebrate Rare Disease Day because we love our Rares! Also, folks from WHF join us to share their comprehensive summit and the gene therapy segment is back with a new host and Dr. Mark Kay and genetic counselor, Kaylee Dollerschell.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The wisdom of advocate Corbin Whittington

Fri, 14 Feb 2025 08:00:00 +0000

We've got distinguished patient advocate Corbin Whittington on the show. Corbin lives with chronic inflammatory demyelinating polyneuropathy (CIDP) and is an executive coach and chair for numerous Boards. He's an incredible leader in the rare disease community and we're excited to have him on BloodStream! We'll also hear from Wes Michael from Rare Patient Voice.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

Subscribe:

To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org

Learn more about survey for the bleeding disorder community from Rare Patient Voice at www.rarepatientvoice.com

Check out Corbin Whittington's LinkedIn page

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Dr. Ben Samelson-Jones on Gene Therapy

Fri, 24 Jan 2025 08:00:00 +0000

Dr. Ben Samelson-Jones is on the show highlighting the advances of Gene Therapy in Hemophilia B and we'll also share an exciting staffing update for Star Therapeutics, a biotech with an encouraging vWD pipeline. We'll tell ya all about it!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org

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Behind the Mystery: Rare and Genetic Diseases

Fri, 10 Jan 2025 08:00:00 +0000

Behind the Mystery is the only television series featuring rare, genetic diseases, and we have creators and producers Carri Levy and Molly Mager, to tell us all about it and how to watch. Also, from the Living with Hemophilia blog, Philippines residents Cza and Jared share their story about living with severe hemophilia B. All this and more!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org

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Max Feinsten talks elbow surgery

Fri, 27 Dec 2024 08:00:00 +0000

Patrick and Amy reflect on their favorite moments of the BloodStream year, plus Max Feinsten is getting surgery and we get to hear about it. And then, another I'm Fine segment with Michael Bishop.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

Subscribe:

I'm Fine is presented by @SanofiUS

Check out season 14 of Stop the Bleeding!

To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org

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Jonathan Cappiello is 1 out of 20

Fri, 13 Dec 2024 08:00:00 +0000

Patrick sits down with Jonathan Cappiello, an ultra-rare who hosts the podcast, 1 out of 20 (who also has a connection to Ryan White!). Plus, our final Gene Therapy segment of the year and those WHF USA announcements. All that and more on BloodStream!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The 1 out of 20 Podcast featuring PJL

It's a Whole New World brought to you by @CSLBehring.

Check out season 14 of Stop the Bleeding!

To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org

Voices for Policy Change + 2025 HFA Preview with CEO Dan Kelsey

Fri, 22 Nov 2024 08:04:00 +0000

We've got HFA CEO Dan Kelsey on the show to give a 2025 preview for the organization. NBDF and Believe Limited have partnered on a new digital advocacy storytelling project, called Voices for Policy Change and we'll tell you all about it! Plus, the new season of Stop the Bleeding! And the I'm Fine segment with Michael Bishop.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

Subscribe:

I'm Fine is presented by @SanofiUS

Check out season 14 of Stop the Bleeding!

To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org

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Gene Therapy Roundtable and Honoring Jess McLean (Page)

Fri, 08 Nov 2024 08:47:00 +0000

On the latest Gene Therapy segment, we host Blood Brothers Rick Starks, Colin Johnston, Bobby Wiseman for a roundtable discussion to hear their unique thoughts about the gene therapy landscape. We also honor Jess McClean (Page)'s life and her contribution to the bleeding disorder community.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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It's a Whole New World brought to you by @CSLBehring.

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NBDF CEO drawing inspiration from local communities

Fri, 25 Oct 2024 15:18:00 +0000

NBDF CEO Phil Gattone traveled to regional chapters (and got infused, y'all) to meet communities on the ground, and he tells us all about it! Plus, big news for the community with a few recent therapy approvals and the latest I'm Fine segment with Michael Bishop.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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I'm Fine is presented by @SanofiUS

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The new insurance nightmare you need to know about

Fri, 11 Oct 2024 07:00:00 +0000

Alternative Funding Programs are a nightmare new insurance tactic that has experts concerned. We've got Zack Duffy and Roland Lamy from the Hemophilia Alliance to break it down and tell you what to look out for. Plus, HFA's Project ECHO and the latest Gene Therapy segment, all about Myths and Misconceptions.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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HFA Project ECHO: Recognition and Care of Women with Bleeding Disorders

Want more information on Alternate Funding Programs? Roland said to Google it.

But, here's some more stuff:

Oct 28 2024, 12:00 pm - 1:00 pm EST

Genentech Patient Foundation is dedicated to making sure that people with hemophilia A can get access to treatment. No matter what type of health insurance you have, and even if you have none at all, there may be some potential options available to help you afford your medicine.

To learn more about these resources and find out if you are eligible, visit www.HemophiliaAccess.com

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International Plasma Awareness Week, y'all!

Fri, 27 Sep 2024 07:00:00 +0000

We recap NBDF's BDC and welcome back PPTA CEO Anita Brikman to share more about International Plasma Awareness Week. Plus, the latest I'm Fine featuring guest host Michael Bishop.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Help celebrate International Plasma Awareness Week!

I'm Fine is presented by @SanofiUS

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Live at BDC with CEO Phil Gattone!

Fri, 13 Sep 2024 07:00:00 +0000

Coming to you LIVE from NBDF's Bleeding Disorder conference, Patrick is with CEO Phil Gattone right after Opening Session. A walk and talk you don't wanna miss! Also, hear how HTCs have operationally aligned to administer gene therapy with Zack Duffy and Roland Lamy from the Hemophilia Alliance on the latest Gene Therapy segment. Plus, an interview with Janet Brewer from CHES.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Hemophilia Film: What We Wished We Could Be

Fri, 23 Aug 2024 07:00:00 +0000

Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the challenges of making the film, Jenna's personal connection to the UK contamination scandal, and how storytelling can honor the heartbreak, courage and sacrifice of the victims of the blood scandal, and their loved ones. Plus, the second installment of Jack Bridge's interview with Luke Pembroke in I'm Fine segment.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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To learn more about Miranda and others in the hemophilia community, please visit www.treathemA.com

I'm Fine is presented by @SanofiUS

What We Wished We Could Be film: Website - Instagram - Trailer

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Gene Therapy Reimbursement? We got you covered.

Fri, 09 Aug 2024 07:00:00 +0000

Patrick survives his first tornado warning and we've got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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To read "What are fibrinogen disorders?" PDF, CLICK HERE.

Tammy's documentary Compromised: Life without Immunity

I'm Fine is presented by @SanofiUS

Listen to the Global Hemophilia Report

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The Dark Side of High Achievement

Fri, 26 Jul 2024 07:00:00 +0000

Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I'm Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plus, Brandon Young and the formation of a rare disease intercenter within FDA.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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To learn more about the FDA's Rare Disease Innovation Hub: EveryLife Foundation

Visit NBDF's Steps for Living

Brandon Young's Country Boy Fishing

I'm Fine is presented by @SanofiUS

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Clinical Trials, Caregiving, and NEW MUSIC!?

Fri, 12 Jul 2024 07:00:00 +0000

On this episode, Patrick James Lynch honors the late Neil Frick, Senior VP for Medical Programs at the National Bleeding Disorders Foundation, recognizing his invaluable two-decade contribution to the bleeding disorders community. We also discuss hemophilia B gene therapy with Dr. Mark Redding, focusing on unique clinical trial designs and the role of steroids. Additionally, Makenna Dietrich shares her journey in bleeding disorder advocacy. The episode includes updates from Star Therapeutics on subcutaneous therapy for von Willebrand disease and insights on closing racial health equity gaps in the US. We also invite you to help pick a new BloodStream "theme song".

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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Star Therapeutics Presents Clinical Data for VGA039, a Subcutaneous Therapy for the Treatment of Von Willebrand Disease (VWD)

Hemophilia Uncensored Social Media: Instagram & TikTok

How the U.S. can close longstanding racial health equity gaps

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The multi-faceted role of HTC social workers

Fri, 28 Jun 2024 07:00:00 +0000

Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I'm Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment?

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

Mild Matters Program

On the Shoulders of Giants Film

Watch the movie and host a screening: ontheshouldersfilm.com

Beyond our Blood

Watch the short films and download the facilitation guide: beyondourblood.com

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Life with an Invisible Disorder

Fri, 14 Jun 2024 07:00:00 +0000

Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We've got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial dosing of gene therapy for hemophiia B.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

On the Shoulders of Giants Film

Watch the movie and host a screening: ontheshouldersfilm.com

Beyond our Blood

Watch the short films and download the facilitation guide: beyondourblood.com

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Mild Hemophilia Matters

Fri, 24 May 2024 07:00:00 +0000

Mild hemophilia truly does matter and we're with Shellye Horowitz, formally with HFA, to hear about HFA's Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I'm Fine with Luke Pembroke.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine and Elite Athletes with Hemophilia are presented by @SanofiUS

Mild Matters Program

On the Shoulders of Giants Film

Watch the movie and host a screening: ontheshouldersfilm.com

Beyond our Blood

Watch the short films and download the facilitation guide: beyondourblood.com

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UK Blood Inquiry Clive Smith & Laurence Woollard

Fri, 10 May 2024 07:00:00 +0000

Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton's story (the first hemophilia B patient to be commercially dosed with gene therapy!).

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

On the Shoulders of Giants Film

Watch the movie and host a screening: ontheshouldersfilm.com

Beyond our Blood

Watch the short films and download the facilitation guide: beyondourblood.com

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Navigating the Currents: Interferons in the Treatment of Polycythemia Vera

Fri, 03 May 2024 07:00:00 +0000

On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia.

If you'd like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia).

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On the Shoulders of Giants is a hit (!) and I'm Fine is back

Fri, 26 Apr 2024 07:00:00 +0000

Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I'm Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

On the Shoulders of Giants Film

Watch the movie and host a screening: ontheshouldersfilm.com

Beyond our Blood

Watch the short films and download the facilitation guide: beyondourblood.com

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New NBDF CEO, Phil Gattone

Fri, 12 Apr 2024 07:00:00 +0000

We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman

Fri, 22 Mar 2024 07:00:00 +0000

Dr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we'll finish up with an Elite Athletes segments will feature bleeding disorder community member, Ricardo Ramirez.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Highlights from ASH with Dr. Akshat Jain

Fri, 08 Mar 2024 08:00:00 +0000

We're back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don't miss it!

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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HFA CEO Dan Kelsey and Rare Disease Day tribute

Fri, 23 Feb 2024 08:00:00 +0000

HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA's history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Check out the Everyday Life Foundation hosting Bombardier Blood

Everyday Life Foundation Legislative Asks

This Rare Disease Day segment is brought to you by Genentech. Genentech has several resources to help caregivers navigate hemophilia including stories from other members in the community. Please visit www.thecommunityhelps.com to learn more.

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NBDF welcomes new CEO; HFA responds

Fri, 09 Feb 2024 08:00:00 +0000

NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin' Rare Disease Day.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Preserving Tainted Blood History and Bath Bleeds

Fri, 26 Jan 2024 08:00:00 +0000

We've got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed.

Show Notes:

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To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Shakeup at HFA and a brand new Gene Therapy segment!

Fri, 12 Jan 2024 08:00:00 +0000

It's a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on gene therapy (whoo!) - all this and more!

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Join the Movement - Equity for Women with Bleeding Disorders

FAIR Coalition

CHES - Programs for Women with Bleeding Disorders

Take Action Today! - Click HERE

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SNL screws up sickle cell.

Thu, 04 Jan 2024 08:00:00 +0000

We've got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we've got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I'm Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We'll get into it all, AND MORE, on this episode.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine and Elite Athletes are presented by @SanofiUS

Sanofi seeks to expand the idea of what's possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com

Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what's possible by visiting Rareblooddisorders.com to hear more about Sanofi's dedication to the bleeding disorder community.

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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The World Health Organization (WHO) gets it wrong

Fri, 08 Dec 2023 08:00:00 +0000

The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I'm Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine and Elite Athletes are presented by @SanofiUS

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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Blo odStream on Twitter

The Dark Side of Resilience + The Gratitude Game

Fri, 24 Nov 2023 08:00:00 +0000

Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because 'tis the season, y'all! Also, A new (and fantastic!) I'm Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Resisting Change and Holiday Dynamics

Fri, 10 Nov 2023 08:00:00 +0000

Amy turns the table on the latest I'm Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine is presented by @SanofiUS

Segment brought to you by Genentech, please visit www.treathemA.com to learn more.

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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Introducing PNH: Facts, Fiction & FYI!

Fri, 03 Nov 2023 20:25:00 +0000

The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI.

Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder.

Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner.

Subscribe to PNH: Facts, Fiction & FYI.

Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams

Fri, 27 Oct 2023 14:00:00 +0000

Mosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I'm Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE from Believe Limited.

Show Notes:

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WFH statement on the Israel-Palestine crisis

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine and Elite Athletes with Hemophilia are presented by @SanofiUS

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset

Fri, 13 Oct 2023 07:00:00 +0000

We're back with another episode of BloodStream featuring Maya Bloomberg's 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I'm Fine segment with Mark Skinner.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at www.ches.education

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Dr. Akshat Jain and NHL coach David Quinn

Mon, 25 Sep 2023 15:59:00 +0000

Dr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I'm Fine with a spotlight on–leadership. Be careful, leaders, we're coming for ya!

Show Notes:

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Watch Redefining Impossible for free HERE

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Elite Athletes and I'm Fine segments presented by @Sanofi

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Embracing Change in Hemophilia Care and Back to School

Fri, 08 Sep 2023 07:00:00 +0000

Amy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I'm Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us!

Show Notes:

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Sickle Awareness Month Resources

Back to School Resources at Steps for Living

Mental Health Matters Too

Watch Redefining Impossible for free HERE

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Elite Athletes segment presented by @Sanofi

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Patrick and Amy's BDC Recap!

Fri, 25 Aug 2023 07:00:00 +0000

Patrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We'll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different experiences. Also, we'll premiere the first Elite Athletes segment that highlights community members from the Redefining Impossible film.

Show Notes:

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Watch Redefining Impossible for free HERE

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Elite Athletes segment presented by @Sanofi

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Taylor Swift changes Amy's life, plus a new segment, and other stuff.

Fri, 11 Aug 2023 07:00:00 +0000

Don't worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I'm Fine. This new segment aims to challenge our "normals" and truly consider the possibilities.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine presented by @Sanofi Take a deeper at LevelsMatter.com.

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NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren

Thu, 27 Jul 2023 07:00:00 +0000

The National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don't miss this one!

Show Notes:

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You can do three practical things to help further the campaign for better treatment for women with bleeding disorders:

1) sign the petition at change.org: Demand Equity in Healthcare for Women

2) Head over to CHES to submit your recommendations for good doctors and hospitals

3) Sign the 'MASAC Document 264' recommendations at hemophilia.org

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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It's here: Gene Therapy for Hemophilia A

Fri, 14 Jul 2023 07:00:00 +0000

Patrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders.

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Listen to The Final Summit Season 2 Podcast!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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Music w/ Max Feinstein and FLOW with Jessica Lauren Richmond

Fri, 23 Jun 2023 07:00:00 +0000

Jessica Lauren Richmond, co-host of the popular FLOW podcast, joins us to discuss all things menstrual health and Amy finally gets to ask –So, how's your FLOW? We also have James Maple back with a music and self-expression segment that spotlights on community member, Max Feinstein.

Show Notes:

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Listen and Subscribe to the FLOW podcast!

Share your FLOW story with us! How's Your Flow Calendly

Tik Tok @howsyourflow

Instagram @howsyourflow

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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World Sickle Cell Day & Sing Me A Story

Fri, 09 Jun 2023 07:00:00 +0000

Join us as we celebrate World Sickle Cell day on June 19th with contributor Maya Bloomberg, the HemeNP and a conversation with hematologist Dr. Mike Callaghan. Great stuff about equity in healthcare, clinical trial participation, the Sing Me a Story organization, and the Denver Nuggets in the finals. Don't miss it!

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Sing Me A Story

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