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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. Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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.   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok      

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   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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.   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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    Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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.   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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 B   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

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  Global Action Network for Sickle Cell and Other Inherited Blood Disorders  Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok