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Conteúdo fornecido por BloodStream Media. Todo o conteúdo do podcast, incluindo episódios, gráficos e descrições de podcast, é carregado e fornecido diretamente por BloodStream Media ou por seu parceiro de plataforma de podcast. Se você acredita que alguém está usando seu trabalho protegido por direitos autorais sem sua permissão, siga o processo descrito aqui https://pt.player.fm/legal.
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BloodStream
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Manage series 1105104
Conteúdo fornecido por BloodStream Media. Todo o conteúdo do podcast, incluindo episódios, gráficos e descrições de podcast, é carregado e fornecido diretamente por BloodStream Media ou por seu parceiro de plataforma de podcast. Se você acredita que alguém está usando seu trabalho protegido por direitos autorais sem sua permissão, siga o processo descrito aqui https://pt.player.fm/legal.
BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
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105 episódios
Marcar/Desmarcar tudo como reproduzido ...
Manage series 1105104
Conteúdo fornecido por BloodStream Media. Todo o conteúdo do podcast, incluindo episódios, gráficos e descrições de podcast, é carregado e fornecido diretamente por BloodStream Media ou por seu parceiro de plataforma de podcast. Se você acredita que alguém está usando seu trabalho protegido por direitos autorais sem sua permissão, siga o processo descrito aqui https://pt.player.fm/legal.
BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
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105 episódios
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×1 Behind the Mystery: Rare and Genetic Diseases 35:04
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35:04Behind the Mystery is the only television series featuring rare, genetic diseases, and we have creators and producers Carri Levy and Molly Mager, to tell us all about it and how to watch. Also, from the Living with Hemophilia blog, Philippines residents Cza and Jared share their story about living with severe hemophilia B. All this and more! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change , head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter…
Patrick and Amy reflect on their favorite moments of the BloodStream year, plus Max Feinsten is getting surgery and we get to hear about it. And then, another I’m Fine segment with Michael Bishop. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter…
Patrick sits down with Jonathan Cappiello, an ultra-rare who hosts the podcast, 1 out of 20 (who also has a connection to Ryan White!). Plus, our final Gene Therapy segment of the year and those WHF USA announcements. All that and more on BloodStream! 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. It’s a Whole New World brought to you by @CSLBehring. The 1 out of 20 Podcast featuring PJL 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…
1 Voices for Policy Change + 2025 HFA Preview with CEO Dan Kelsey 43:54
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43:54We’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: Subscribe: 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter…
1 Gene Therapy Roundtable and Honoring Jess McLean (Page) 31:54
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31:54On 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: 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. It’s a Whole New World brought to you by @CSLBehring. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter…
1 NBDF CEO drawing inspiration from local communities 38:05
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38:05NBDF 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: Subscribe: The BloodStream Podcast I’m Fine is presented by @SanofiUS Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter…
1 The new insurance nightmare you need to know about 53:36
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53:36Alternative 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: Subscribe: 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter…
1 International Plasma Awareness Week, y’all! 38:36
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38:36We 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: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter…
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 BloodStream on Twitter…
1 Hemophilia Film: What We Wished We Could Be 1:04:38
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1:04:38Patrick 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…
1 Gene Therapy Reimbursement? We got you covered. 43:43
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43:43Patrick 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…
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…
1 Clinical Trials, Caregiving, and NEW MUSIC!? 41:53
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41:53On 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…
1 The multi-faceted role of HTC social workers 1:02:23
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1:02:23Patrick 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…
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