The Red Ink Project & Global Action Network for Sickle Cell
BloodStream
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 to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Beyond the Diagnosis
BloodStream
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...
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Joint Health and Gene Therapy - Live from BDC!
BloodStream
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...
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Channel swimmer (and blood brother!) Tim Stowers
BloodStream
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 to learn more. Show Notes:...
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WHO Guidelines Updated!
BloodStream
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 to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which...
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Emerging treatment for vWD?!
BloodStream
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:...
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Patrick’s Surgery and Ed Rogoff’s book
BloodStream
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 to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Gene Therapy Around the World
BloodStream
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 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...
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Actress Sami Rappoport’s short film, VIII. Plus Jeff & Barb with Dr. Joanna Davis
BloodStream
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 / Presenting Sponsor: Takeda, visit to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Bleeding Disorders Conference preview with NBDF’s Phil Gattone
BloodStream
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 to learn more. Segment is brought to you by Genentech: Visit to watch the short film. Show Notes: Subscribe: Connect with BloodStream Media:
info_outlineThis month on The BloodStream Podcast, Shari Luckey shares her “Living in the Shadows with Mild Hemophilia” story, Natalie presents an article on the things you need to know before purchasing CBD oil, we bring to you updates on the legal dispute between Roche/Genentech, and we hear from participants and organizers of the Wheels For The World Barry Haarde Memorial Bike Ride. All that and more on Episode 27 of The BloodStream Podcast!
Exclusive Sponsor: Shire
Latest Ask The Expert Podcast: Ep. 17: Mental Health - w/ Debbie de la Riva - July 23, 2018
Latest Powering Through Podcast: Ep. 19 - Idaho w/ Preston Bowling, Skyler Openshaw, & Allie Cashel
STBhemo.com (Stop The Bleeding!)
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Like Segment: Before You Buy CBD Oil Online, Ask These Questions
Share Segment: Shari Luckey - “Living in the shadows with Mild Hemophilia”
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Update on Shire Injunction Filing on Roche/Genentech
Court Rules on Shire/Roche Preliminary Injunction
Interview Segment: Laurie Kelley
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