• International Plasma Awareness Week, y’all!
    Sep 27 2024

    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:

    Subscribe:

    The BloodStream Podcast

    Help celebrate International Plasma Awareness Week!

    I’m Fine is presented by @SanofiUS

    Connect with BloodStream Media:

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    39 mins
  • Live at BDC with CEO Phil Gattone!
    Sep 13 2024

    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.

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    42 mins
  • Hemophilia Film: What We Wished We Could Be
    Aug 23 2024

    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:

    Subscribe:

    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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    1 hr and 5 mins
  • Gene Therapy Reimbursement? We got you covered.
    Aug 9 2024

    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:

    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.

    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

    Connect with BloodStream Media:

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    44 mins
  • The Dark Side of High Achievement
    Jul 26 2024

    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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    37 mins
  • Clinical Trials, Caregiving, and NEW MUSIC!?
    Jul 12 2024

    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:

    Subscribe:

    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:

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    42 mins
  • The multi-faceted role of HTC social workers
    Jun 28 2024

    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:

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    1 hr and 2 mins
  • Life with an Invisible Disorder
    Jun 14 2024

    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

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    28 mins