BloodStream
We’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don’t miss it! Show Notes: Subscribe: 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 treatment. Visit BeyondHemB.com or download B SUPPORT...
info_outline HFA CEO Dan Kelsey and Rare Disease Day tributeBloodStream
HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. Check out the hosting Bombardier Blood Everyday Life Foundation This Rare Disease Day segment is brought to you by Genentech. Genentech has several resources to help caregivers navigate hemophilia including stories from other members...
info_outline NBDF welcomes new CEO; HFA respondsBloodStream
NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day. Show Notes: Subscribe: 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 treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps...
info_outline Preserving Tainted Blood History and Bath BleedsBloodStream
We’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed. Show Notes: Subscribe: To learn more about the Committee of Ten Thousand and to get involved, visit Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
info_outline Shakeup at HFA and a brand new Gene Therapy segment!BloodStream
It’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on gene therapy (whoo!) - all this and more! Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. Join the Movement - Equity for Women with Bleeding Disorders CHES - Take Action Today! - Click ...
info_outline SNL screws up sickle cell.BloodStream
We’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We’ll get into it all, AND MORE, on this episode. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I’m Fine and Elite Athletes are presented by @SanofiUS Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look...
info_outline The World Health Organization (WHO) gets it wrongBloodStream
The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I’m Fine and Elite Athletes are presented by @SanofiUS Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind...
info_outline The Dark Side of Resilience + The Gratitude GameBloodStream
Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more.
info_outline Resisting Change and Holiday DynamicsBloodStream
Amy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I’m Fine is presented by @SanofiUS Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia...
info_outline Introducing PNH: Facts, Fiction & FYI!BloodStream
The BloodStream Podcast is off this week but we have something very special for you. Introducing . Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. Subscribe to .
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!
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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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