BloodStream

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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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

Portraits of Progress: https://www.portraitsofprogress.com/

HFA Voice of Community: https://www.hemophiliafed.org/voice-of-the-community/

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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.

Red Ink Project

Global Action Network for Sickle Cell and Other Inherited Blood Disorders

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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.

https://www.beyondthediagnosis.org/

https://findageneticcounselor.nsgc.org/?reload=timezone

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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.

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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 bleedingdisorders.com to learn more.

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 [email protected] to learn more.

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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.

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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.

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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.

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

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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.

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