Does chronic illness lead to feeling “less than?”

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:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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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:

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The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Check out the Everyday Life Foundation hosting Bombardier Blood

Everyday Life Foundation Legislative Asks

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 in the community. Please visit www.thecommunityhelps.com to learn more.

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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:

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The BloodStream Podcast

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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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:

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To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Connect with BloodStream Media:

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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:

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The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Join the Movement - Equity for Women with Bleeding Disorders

FAIR Coalition

CHES - Programs for Women with Bleeding Disorders

Take Action Today! - Click HERE

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.

Connect with BloodStream Media:

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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:

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The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com 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 hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com

Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation 

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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:

The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com 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 hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com

Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter

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:

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The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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:

The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com 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 and an important connection between factor activity levels and potential activities at LevelsMatter.com

Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.

Segment brought to you by Genentech, please visit www.treathemA.com to learn more.

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI. 

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 PNH: Facts, Fiction & FYI.