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State of the Organizations w/ Dr. Len Valentino & Sharon Meyers

BloodStream

Release Date: 12/10/2021

Journey to Joint Health Panel - LIVE from HFA! show art Journey to Joint Health Panel - LIVE from HFA!

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:     Presenting Sponsor: Takeda. Visit to learn more.   Segment Sponsored by Genentech: Visit to learn more.     Connect...

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BloodStream

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 Unburying My Father, the book will be released on June 12, 2022. Learn more or...

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BloodStream

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 ! Presenting Sponsor: Takeda. Visit to learn more.   Connect with BloodStream Media:    

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BloodStream

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 to learn more. Connect with BloodStream Media:    

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Brian O’Mahony, Origins of Ankle Pain, and Foam Rollers! show art Brian O’Mahony, Origins of Ankle Pain, and Foam Rollers!

BloodStream

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:   Presenting Sponsor: Takeda. Visit to learn more. Connect with BloodStream Media: ...

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BloodStream

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 to learn more.  ...

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Living Beyond the Diagnosis with Kristin Eilenberg of EE Minds, a program designed for parents who have children with medical conditions, plus HFA is back and a chat with Josh Bragg! show art Living Beyond the Diagnosis with Kristin Eilenberg of EE Minds, a program designed for parents who have children with medical conditions, plus HFA is back and a chat with Josh Bragg!

BloodStream

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: Energizing & Empowering Minds Learn and for a program Connect with BloodStream Media:

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Let’s celebrate Rare Disease Day with Brendan Hayes and a Let’s Talk from Josh Bragg! show art Let’s celebrate Rare Disease Day with Brendan Hayes and a Let’s Talk from Josh Bragg!

BloodStream

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: 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. , a segment devoted to...

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FLOW co-host, Sarah Watson; community member, Jim Mueller and introducing The Global Hemophilia Report w/ Dr. Donna DiMichele show art FLOW co-host, Sarah Watson; community member, Jim Mueller and introducing The Global Hemophilia Report w/ Dr. Donna DiMichele

BloodStream

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: Subscribe to BloodStream Podcast: Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution: HR5801 - The Help Ensure Lower Patient Copays Act: The Global Hemophilia Report: Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia A and...

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BloodStream

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: Subscribe to BloodStream Podcast: BioMarin plans return to FDA with updated data on hemophilia gene therapy (BioPharmaDive): BioMarin's hemophilia A gene therapy hits goal in phase 3, teeing up FDA filing despite durability doubts (Fierce Biotech): Connect with BloodStream Media:    

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More Episodes
Patrick and Amy welcome Dr. Len Valentino, CEO with The National Hemophilia Foundation and HFA CEO Sharon Meyers to give listeners a review of 2021 and lookahead to 2022. 

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

The National Hemophilia Foundation: Link

Hemophilia Federation of America: Link

Our Segment this month is made possible by Genentech

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