BloodStream

We’ve got HFA CEO Dan Kelsey on the show to give a 2025 preview for the organization. NBDF and Believe Limited have partnered on a new digital advocacy storytelling project, called Voices for Policy Change and we’ll tell you all about it! Plus, the new season of Stop the Bleeding! And the I’m Fine segment with Michael Bishop. 

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

I’m Fine is presented by @SanofiUS

Check out season 14 of Stop the Bleeding!

To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org

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On the latest Gene Therapy segment, we host Blood Brothers Rick Starks, Colin Johnston, Bobby Wiseman for a roundtable discussion to hear their unique thoughts about the gene therapy landscape. We also honor Jess McClean (Page)’s life and her contribution to the bleeding disorder community.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

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.

It’s a Whole New World brought to you by @CSLBehring. 

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NBDF CEO Phil Gattone traveled to regional chapters (and got infused, y’all) to meet communities on the ground, and he tells us all about it! Plus, big news for the community with a few recent therapy approvals and the latest I’m Fine segment with Michael Bishop.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

I’m Fine is presented by @SanofiUS

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Alternative Funding Programs are a nightmare new insurance tactic that has experts concerned. We’ve got Zack Duffy and Roland Lamy from the Hemophilia Alliance to break it down and tell you what to look out for. Plus, HFA’s Project ECHO and the latest Gene Therapy segment, all about Myths and Misconceptions. 

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

Want more information on Alternate Funding Programs? Roland said to Google it. 

But, here’s some more stuff:

• AFP White Paper

• The Present and Future of Alternative Funding Programs for Specialty Drugs

HFA Project ECHO: Recognition and Care of Women with Bleeding Disorders

Oct 28 2024, 12:00 pm - 1:00 pm EST

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.

Genentech Patient Foundation is dedicated to making sure that people with hemophilia A can get access to treatment. No matter what type of health insurance you have, and even if you have none at all, there may be some potential options available to help you afford your medicine.

To learn more about these resources and find out if you are eligible, visit www.HemophiliaAccess.com

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We recap NBDF’s BDC and welcome back PPTA CEO Anita Brikman to share more about International Plasma Awareness Week. Plus, the latest I’m Fine featuring guest host Michael Bishop.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

Help celebrate International Plasma Awareness Week!

I’m Fine is presented by @SanofiUS

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Coming to you LIVE from NBDF’s Bleeding Disorder conference, Patrick is with CEO Phil Gattone right after Opening Session. A walk and talk you don’t wanna miss! Also, hear how HTCs have operationally aligned to administer gene therapy with Zack Duffy and Roland Lamy from the Hemophilia Alliance on the latest Gene Therapy segment. Plus, an interview with Janet Brewer from CHES.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

Subscribe:

The BloodStream Podcast

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:

BloodStreamMedia.com

BloodStream on Facebook 

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Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the challenges of making the film, Jenna’s personal connection to the UK contamination scandal, and how storytelling can honor the heartbreak, courage and sacrifice of the victims of the blood scandal, and their loved ones. Plus, the second installment of Jack Bridge’s interview with Luke Pembroke in I’m Fine segment. 

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

To learn more about Miranda and others in the hemophilia community, please visit www.treathemA.com

I’m Fine is presented by @SanofiUS 

What We Wished We Could Be film: Website - Instagram - Trailer

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Patrick survives his first tornado warning and we’ve got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement. 

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

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.

To read “What are fibrinogen disorders?” PDF, CLICK HERE. 

Tammy’s documentary Compromised: Life without Immunity

I’m Fine is presented by @SanofiUS 

Listen to the Global Hemophilia Report

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Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I’m Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plus, Brandon Young and the  formation of a rare disease intercenter within FDA.

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

To learn more about the FDA’s Rare Disease Innovation Hub: EveryLife Foundation 

Visit NBDF’s Steps for Living

Brandon Young’s Country Boy Fishing

I’m Fine is presented by @SanofiUS 

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On this episode, Patrick James Lynch honors the late Neil Frick, Senior VP for Medical Programs at the National Bleeding Disorders Foundation, recognizing his invaluable two-decade contribution to the bleeding disorders community. We also discuss hemophilia B gene therapy with Dr. Mark Redding, focusing on unique clinical trial designs and the role of steroids. Additionally, Makenna Dietrich shares her journey in bleeding disorder advocacy. The episode includes updates from Star Therapeutics on subcutaneous therapy for von Willebrand disease and insights on closing racial health equity gaps in the US. We also invite you to help pick a new BloodStream “theme song”. 

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Show Notes:

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The BloodStream Podcast

Hemophilia Uncensored Social Media: Instagram & TikTok 

Star Therapeutics Presents Clinical Data for VGA039, a Subcutaneous Therapy for the Treatment of Von Willebrand Disease (VWD)

 How the U.S. can close longstanding racial health equity gaps

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:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter