BloodStream

Patrick and Amy hosted a LIVE Journey to Joint Health panel at HFA with eight blood brothers who shared their experience participating in the HFA led physical fitness challenge and now you can listen in! You'll also hear from HFA CEO Sharon Myers and Board Chair Allie Ritcey, and we'll cap today's episode off with our second installment of The Well, a holistic wellness segment led by FLOW podcast host Jessica Lauren Richmond.

Show Notes:

HFA Symposium 2022

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

Segment Sponsored by Genentech: Visit https://www.hemlibra.com to learn more.

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Join Patrick and Amy for another LIVE episode from HFA Symposium where we have the pleasure of speaking with keynote speaker, Zander Masser. Zander's father, Randy, lived with severe hemophilia B until he passed from AIDS-related illnesses in 2000 at the age of 52. Twenty years later, Zander unburied 10,000 slides from Randy's career as a professional photographer and explores his process of exploring grief through creativity. Hear his incredible story right here on BloodStream.

Show Notes:

Learn more about Randy Masser

Unburying My Father, the book will be released on June 12, 2022. Learn more or pre-order HERE!

HFA Symposium 2022

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

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Patrick and Amy are LIVE from HFA Symposium! Listen in to keynote speaker, Adar Cohen, as he shares how the strength of our communities relies on our willingness and our ability to have the big, complicated conversations in our work, in our families, and in our civic lives.We'll also have a new Let's Talk segment with Josh Bragg. A great episode about those "big conversations" we often avoid.

Show Notes:

Learn more about Adar Cohen!

HFA Symposium 2022

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

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In this mini episode, Patrick and Amy run through Believe & BloodStream presence at the Hemophilia Federation of America's Symposium before speaking about some major April anniversaries and introducing the new season of BloodStream Media's Pain Podcast! Show Notes:

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

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HFA Symposium 2022

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Patrick spends time with advocacy leader and patient, Brian O'Mahony, about issues facing the community in Ireland and his updates on his experience as a person with hemophilia who's been dosed with gene therapy. Amy speaks with Dr. Ben Samelson-Jones about the use of Twitter in hemophilia and we have a new segment! Listen in for the debut of a brand new monthly segment, The Well, featuring Jessica Lauren Richmond of BloodStream's FLOW podcast.

Show Notes:

Article from Hemophilia News Today: Ankle Joint Damage in Hemophilia Common, But Not Linked to Pain

Digital haemophilia: Insights into the use of social media for haemophilia care, research and advocacy

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

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Patrick and Amy welcome news producer and thalassemia advocate Nina Maria Baldalamenti to the show as well as blood brother and frequent flier of BloodStream, Luke Pembroke, who reveals he’s on the brink of leaving for, dare we say, an adventure of a lifetime (!!). They also discuss the recent MASAC meeting (Medical and Scientific Advisory Council of NHF), present the latest Let’s Talk mental health segment with Josh Bragg and play clips on novel therapies from the latest episode of Global Hemophilia Report.

 

Show Notes:

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

 

Let’s Talk Sponsor: Sanofi.

Visit LetsTalkMH.com for mental health resources

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Global Hemophilia Report - new episode!

Haemcast Podcast w/ Luke Pembroke and PJL!

Max Feinstein on 2DD Podcast

MASAC Information

Learn more about Thalassemia!

Catch up on previous segments of Let’s Talk!

 

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Hear from Kristin Eilenberg of EE Minds about their state-of-the-art programs designed for parents who have children with medical conditions. With courses such as “I Am The Parent, Your New Normal, and Empowerment” and “Rules of the Road and Meaningful Consequences”, EE Minds is changing the way parents parent. Plus, HFA is back and a chat with Josh Bragg! A great episode!

Show Notes:

Subscribe to BloodStream Podcast

Energizing & Empowering Minds

Living Beyond The Diagnosis

Testimonials

Program Overview

Learn and register for a program

Register for HFA Symposium 

Joint Damage Seen in Hem A Patients With Milder Disease, Few Bleeds

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It’s Rare Disease Day so we’re honoring our caretakers with a special interview with Brendan Hayes, a hemophilia mom who has had the opportunity to work with other rare disease groups as a national advocate. We’ve got another Let’s Talk segment featuring Josh Bragg’s journey to finding joy. A feel good, can’t miss episode!  Show Notes: Explore Rare Disease Day and Share Your Colors!

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Check Out Season One of Let’s Talk, a segment devoted to mental health in the bleeding disorder community. 

Let’s Talk - a film by Believe Limited, made possisble by Sanofi

Find Resources at Mental Health Matters Too

Presenting Sponsor: Takeda

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Patrick and Amy welcome new FLOW co-host and lady bleeder, Sarah Watson AND community member, Jim Mueller, who shares some cool ideas about financial planning. We’ll also introduce our new podcast The Global Hemophilia Report with Dr. Donna DiMichele. 

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution: Link

HR5801 - The Help Ensure Lower Patient Copays Act: Link

The Global Hemophilia Report: Link

Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia A and caregivers of children ages 1-17 years old with hemophilia A (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at [email protected].

Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia B and caregivers of children ages 1-17 years old with hemophilia B (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at [email protected].

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Dr. Guy Young is here to break down the latest data out of the BioMarin gene therapy clinical trial. We get a new Let’s Talk segment featuring Josh Bragg AND Patrick reveals a big secret. Don’t miss it! Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

BioMarin plans return to FDA with updated data on hemophilia gene therapy (BioPharmaDive): Link

BioMarin's hemophilia A gene therapy hits goal in phase 3, teeing up FDA filing despite durability doubts (Fierce Biotech): Link

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