Episodes
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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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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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Episodes manquant?
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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:
Subscribe:
The BloodStream Podcast
Help celebrate International Plasma Awareness Week!
I’m Fine is presented by @SanofiUS
Connect with BloodStream Media:
BloodStreamMedia.com
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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:
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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:
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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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
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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:
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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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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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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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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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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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:
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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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We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC.
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.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
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Dr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athletes segments will feature bleeding disorder community member, Ricardo Ramirez.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
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We’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don’t miss it!
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.Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
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HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media.
Show Notes:
Subscribe:
The BloodStream Podcast
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Check out the Everyday Life Foundation hosting Bombardier Blood
Everyday Life Foundation Legislative Asks
This Rare Disease Day segment is brought to you by Genentech. Genentech has several resources to help caregivers navigate hemophilia including stories from other members in the community. Please visit www.thecommunityhelps.com to learn more.
Connect with BloodStream Media:
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NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day.
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.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
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We’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed.
Show Notes:
Subscribe:
The BloodStream Podcast
To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Connect with BloodStream Media:
BloodStreamMedia.com
BloodStream on Facebook
BloodStream on Twitter
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