BloodStream
BloodStream Media
BloodStream Podcast
- 48 minutes 12 secondsPsychosocial 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:BioMarin pulls hemophilia gene therapy Roctavian
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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13 March 2026, 7:00 am - 31 minutes 4 secondsJeff & 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 bleedingdisorders.com to learn more.
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27 February 2026, 8:00 am - 33 minutes 19 secondsA 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 bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
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20 February 2026, 8:00 am - 39 minutes 22 secondsASH 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 bleedingdisorders.com to learn more.
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13 February 2026, 8:00 am - 37 minutes 52 secondsAmy'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 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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23 January 2026, 8:00 am - 34 minutes 55 secondsTop 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 bleedingdisorders.com to learn more.
I'm Fine is presented by @SanofiUS
#bloodstreammedia #raredisease #bleedingdisorders #podcast #chronicdisease #hemophiliacommunity #advocacy
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16 January 2026, 8:00 am - 58 minutes 53 secondsBlood 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 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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26 December 2025, 8:00 am - 50 minutes 15 secondsThe 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 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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19 December 2025, 8:00 am - 37 minutes 28 secondsBlood 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 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
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12 December 2025, 8:00 am - 1 hour 2 minutesBlood 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 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
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28 November 2025, 8:00 am - 27 minutes 16 secondsI'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 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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21 November 2025, 8:00 am - More Episodes? Get the App