BloodStream
BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
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Navigating the Hemophilia Journey: A Conversation with Dr. Singleton and Peter Fischer
07/17/2026
Navigating the Hemophilia Journey: A Conversation with Dr. Singleton and Peter Fischer
Please see 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: For information on how to navigate your treatment journey, visit the Shared Decision-making Guide . 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.
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Another Barb & Jeff Interview with Gary McLain
07/10/2026
Another Barb & Jeff Interview with Gary McLain
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 to learn more. I’m Fine is presented by @SanofiUS Subscribe: Connect with BloodStream Media:
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How the Patient Perspective Led to a Hemophilia Medical Breakthrough
07/08/2026
How the Patient Perspective Led to a Hemophilia Medical Breakthrough
Please see 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 . 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-1267 Show Notes: For safety information visit: For information on how to navigate your treatment journey, visit the Shared Decision-making Guide . 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.
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FLOW Podcast Has a New Look!
06/26/2026
FLOW Podcast Has a New Look!
On the latest episode of BloodStream, Patrick and Amy introduce rebrand, preview our upcoming Hemophilia B series with , and share the latest hot tips for sending your kids to camp. Listen now and subscribe to wherever you get your podcasts so you do not miss what is coming next. Show Notes: Presenting Sponsor: Takeda, visit to learn more. Subscribe: Connect with BloodStream Media:
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A candid convo with HTC nurse practitioner, Joe Stanco
06/12/2026
A candid convo with HTC nurse practitioner, Joe Stanco
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: Presenting Sponsor: Takeda, visit to learn more. I’m Fine is presented by @SanofiUS #bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy Subscribe: Connect with BloodStream Media:
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Climbing the Seven Summits to raise awareness?!
05/22/2026
Climbing the Seven Summits to raise awareness?!
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: Presenting Sponsor: Takeda, visit to learn more. Subscribe: Connect with BloodStream Media:
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Lived experience across generations of bleeding disorders
05/08/2026
Lived experience across generations of bleeding disorders
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 to learn more. I’m Fine is presented by @SanofiUS Subscribe: Connect with BloodStream Media:
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Plasma donors, RARE BLOOD, and advocacy wins
04/24/2026
Plasma donors, RARE BLOOD, and advocacy wins
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: Presenting Sponsor: Takeda, visit to learn more. Subscribe: Connect with BloodStream Media:
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What happened to HEMGENIX!? An update on gene therapy.
04/10/2026
What happened to HEMGENIX!? An update on gene therapy.
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 to learn more. Subscribe: Connect with BloodStream Media:
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Understanding Hemophilia A & B with Inhibitors: SEVENFACT in Focus
04/03/2026
Understanding Hemophilia A & B with Inhibitors: SEVENFACT in Focus
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. to learn more about SEVENFACT.
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100 Years of vWD w/ Dr. Nathan Connell
03/27/2026
100 Years of vWD w/ Dr. Nathan Connell
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 to learn more. Subscribe: Connect with BloodStream Media:
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Psychosocial support and bye bye, BioMarin
03/13/2026
Psychosocial support and bye bye, BioMarin
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: Presenting Sponsor: Takeda, visit to learn more. I’m Fine is presented by @SanofiUS #bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy Subscribe: Connect with BloodStream Media:
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Jeff & Barb with Connie Montgomery!
02/27/2026
Jeff & Barb with Connie Montgomery!
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 to learn more. Subscribe: Connect with BloodStream Media:
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A preview of 2026 World Congress with Dr. Glenn Pierce
02/20/2026
A preview of 2026 World Congress with Dr. Glenn Pierce
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 to learn more. I’m Fine is presented by @SanofiUS Subscribe: Connect with BloodStream Media:
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ASH 2025 Highlights
02/13/2026
ASH 2025 Highlights
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 to learn more. Subscribe: Connect with BloodStream Media:
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Amy’s History in Hemophilia
01/23/2026
Amy’s History in Hemophilia
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 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 Subscribe: Connect with BloodStream Media:
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Top Bleeding Disorders Stories of 2025
01/16/2026
Top Bleeding Disorders Stories of 2025
On this episode of BloodStream, we look back at a year that reshaped the bleeding disorders community. Our Top Stories of 2025 segment explores the biggest shifts, from expanded treatment choices and growing complexity, to hard conversations about safety, trust, and the real-world limits of innovation. We examine gene therapy’s reality-check moment, global progress through changes to the WHO Essential Medicines List, and why 2025 marked a turning point for women and girls with bleeding disorders. Also featured, a powerful I’m Fine segment with Makenna Dietrich, who shares how “I’m fine” can hide anxiety and inaction, and why waiting has a cost. Her story is a reminder that speaking up and seeking support can bring clarity and change. Together, these stories capture a year defined by honesty, courage, and a deeper understanding of what progress really asks of us. Presenting Sponsor: Takeda, visit to learn more. I’m Fine is presented by @SanofiUS #bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy Show Notes: Subscribe: Connect with BloodStream Media:
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Blood Brothers - Part 3
12/26/2025
Blood Brothers - Part 3
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 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 to Subscribe: Connect with BloodStream Media:
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The Stress of Shifting Roles with Cheri Clark
12/19/2025
The Stress of Shifting Roles with Cheri Clark
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 to learn more. I’m Fine is presented by @SanofiUS #bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy Show Notes: Rareblooddisorders.com Subscribe: Connect with BloodStream Media:
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Blood Brothers - Part 2
12/12/2025
Blood Brothers - Part 2
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 to learn more. Show Notes: To meet members of the community and to hear more about their hemophilia A journey, head to Subscribe: Connect with BloodStream Media:
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Blood Brothers - Part 1
11/28/2025
Blood Brothers - Part 1
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 to learn more. Show Notes: To meet members of the community and to hear more about their hemophilia A journey, head to Subscribe: Connect with BloodStream Media:
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I’m Fine is back! Featuring Benjamin Denman
11/21/2025
I’m Fine is back! Featuring Benjamin Denman
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 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 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: HFA Voice of Community: Subscribe: Connect with BloodStream Media:
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The Red Ink Project & Global Action Network for Sickle Cell
11/14/2025
The Red Ink Project & Global Action Network for Sickle Cell
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 to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Beyond the Diagnosis
10/24/2025
Beyond the Diagnosis
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 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 or download B SUPPORT wherever you get your apps for more information. Show Notes: Subscribe: Connect with BloodStream Media:
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Joint Health and Gene Therapy - Live from BDC!
10/17/2025
Joint Health and Gene Therapy - Live from BDC!
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 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 or download B SUPPORT wherever you get your apps for more information. Show Notes: Subscribe: Connect with BloodStream Media:
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Channel swimmer (and blood brother!) Tim Stowers
10/10/2025
Channel swimmer (and blood brother!) Tim Stowers
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 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 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. Subscribe: Connect with BloodStream Media:
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WHO Guidelines Updated!
09/26/2025
WHO Guidelines Updated!
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 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 or download B SUPPORT wherever you get your apps for more information. Show Notes: Subscribe: Connect with BloodStream Media:
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Emerging treatment for vWD?!
09/19/2025
Emerging treatment for vWD?!
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 to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Patrick’s Surgery and Ed Rogoff’s book
09/12/2025
Patrick’s Surgery and Ed Rogoff’s book
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 to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Gene Therapy Around the World
08/22/2025
Gene Therapy Around the World
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 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 or download B SUPPORT wherever you get your apps for more information. Show Notes: Subscribe: Connect with BloodStream Media:
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