Episodes
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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.
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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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Missing episodes?
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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.
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Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI
#HYMPAVZISponsored William S. Somers, Ph.D. is 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. To learn more and for 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 is not intended to replace discussions with a healthcare provider.
PP-HYM-USA-1071
Show Notes:
For prescribing information visit pfi.sr/HYMPAVZI_PI
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
HIGHLIGHTS OF PRESCRIBING INFORMATION
These highlights do not include all the information needed to use HYMPAVZI safely and effectively. See full prescribing information for HYMPAVZI.
HYMPAVZI (marstacimab-hncq) injection, for subcutaneous use
Initial U.S. Approval: 2024INDICATIONS AND USAGE
HYMPAVZI is a tissue factor pathway inhibitor (TFPI) antagonist indicated for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients 12 years of age and older with:
hemophilia A (congenital factor VIII deficiency) without factor VIII inhibitors, or
hemophilia B (congenital factor IX deficiency) without factor IX inhibitors.
DOSAGE AND ADMINISTRATION
See Full Prescribing Information for important dosing and administration instructions.
The recommended dosage of HYMPAVZI is:
Loading dose: 300 mg (two 150 mg injections) by subcutaneous injection
Maintenance dose: One week after the loading dose, initiate maintenance dosing of 150 mg every week by subcutaneous injection on the same day each week, at any time of day.
Dose adjustment to 300 mg subcutaneous injection weekly can be considered.
Factor VIII and factor IX products can be administered for the treatment of breakthrough bleeds in patients receiving HYMPAVZI. Do not use additional doses of HYMPAVZI to treat breakthrough bleeds.
Temporarily discontinue HYMPAVZI before major surgery.
DOSAGE FORMS AND STRENGTHS
Injection: 150 mg/mL in a single-dose prefilled syringe
Injection: 150 mg/mL in a single-dose prefilled pen
CONTRAINDICATIONS
None.
WARNINGS AND PRECAUTIONS
Thromboembolic Events: Thromboembolic events may occur. Interrupt HYMPAVZI prophylaxis if symptoms occur.
Hypersensitivity: Hypersensitivity reactions may occur. In the event of a severe allergic reaction, discontinue HYMPAVZI.
Embryofetal Toxicity: May cause fetal harm. Advise females of reproductive potential of the potential risk to the fetus and to use effective contraception.
ADVERSE REACTIONS
Adverse reactions reported in ≥3% of HYMPAVZI-treated patients were injection site reaction, headache, and pruritus.
To report SUSPECTED ADVERSE REACTIONS, contact Pfizer Inc. at 1-800-438-1985 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
See 17 for PATIENT COUNSELING INFORMATION and FDA-approved patient labeling.
Revised: 12/2025
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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:
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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:NY State Senator Joseph Addabbo steps up for bleeding disorders
Sanofi backs 2 more documentary films about rare blood disorders
theredinkproject.org
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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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.
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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. -
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.
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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:BioMarin pulls hemophilia gene therapy Roctavian
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
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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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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 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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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 Bhttps://www.nejm.org/doi/full/10.1056/NEJMoa2514332
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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 bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
Show Notes:Subscribe:
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Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
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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
to www.hemophiliacommunity.com
Final Analysis of a Study of Etranacogene Dezaparvovec for Hemophilia BSubscribe:
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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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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
to www.hemophiliacommunity.com
Subscribe:
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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
to www.hemophiliacommunity.com
Subscribe:
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Connect with BloodStream Media:
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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/
Subscribe:
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Connect with BloodStream Media:
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