BloodStream

BloodStream Media
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Aug 23, 2024 • 1h 5min

Hemophilia Film: What We Wished We Could Be

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   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter
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Aug 9, 2024 • 44min

Gene Therapy Reimbursement? We got you covered.

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: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   
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Jul 26, 2024 • 37min

The Dark Side of High Achievement

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: Subscribe: 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    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   
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Jul 12, 2024 • 42min

Clinical Trials, Caregiving, and NEW MUSIC!?

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: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   
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Jun 28, 2024 • 1h 2min

The multi-faceted role of HTC social workers

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   
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Jun 14, 2024 • 28min

Life with an Invisible Disorder

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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May 24, 2024 • 56min

Mild Hemophilia Matters

Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke. Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   I’m Fine and Elite Athletes with Hemophilia are 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
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May 10, 2024 • 52min

UK Blood Inquiry Clive Smith & Laurence Woollard

Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton’s story (the first hemophilia B patient to be commercially dosed with gene therapy!).    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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May 3, 2024 • 26min

Navigating the Currents: Interferons in the Treatment of Polycythemia Vera

On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia. If you’d like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia).    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter
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Apr 26, 2024 • 39min

On the Shoulders of Giants is a hit (!) and I’m Fine is back

Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I’m Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment.  Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. 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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