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

Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.

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

Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I’m Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment?

Show Notes:

Subscribe:

The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I’m Fine is presented by @SanofiUS

Mild Matters Program

On the Shoulders of Giants Film

Watch the movie and host a screening: ontheshouldersfilm.com

Beyond our Blood

Watch the short films and download the facilitation guide: beyondourblood.com

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We’ve got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial dosing of gene therapy for hemophiia B.

Show Notes:

Subscribe:

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.

On the Shoulders of Giants Film

Watch the movie and host a screening: ontheshouldersfilm.com

Beyond our Blood

Watch the short films and download the facilitation guide: beyondourblood.com

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter