BloodStream

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

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. 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. Show Notes: https://www.beyondthediagnosis.org/ https://findageneticcounselor.nsgc.org/?reload=timezone 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

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. 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. 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

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 summited Everest and completed solo English 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. 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 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. 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. 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

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: 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

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

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. 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. 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

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: 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

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: 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

Our bud, Max Feinstein, is back with us to share the outcome of his elbow surgery and he surprises us with a cover of Hemophiliac of Love (!!). Plus, the most pressing question when it comes to gene therapy for hemophilia B: How long does it last? Hanna does a deep dive into that very question with guest, Dr. Andrew Davidoff. 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. 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

Rick Lindfors is cool. He lives with Type 3 von Willebrands and is on the Search and Rescue team for his sheriff's office in Oregon. He sits down with Patrick to chat about how he saw it as an opportunity to give back to his younger self, who, for a time, didn't have anyone coming to rescue them. Listen in to his inspiring story - only on BloodStream! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. 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

Dr. Erik Berntorp (medical doctor, researcher, and professor at Lund University in Sweden) joins us to discuss something special related to von willebrand disease and Matthew Zachary, award-winning Cancer Maverick, Keynote Speaker, and Pioneering Podcaster sits down with Patrick to chat all things advocacy and media! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. 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