BloodStream

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Takeda, visit bleedingdisorders.com to learn more.

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enMarch 08, 2024

HFA CEO Dan Kelsey and Rare Disease Day tribute

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.

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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.

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enFebruary 23, 2024

NBDF welcomes new CEO; HFA responds

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.

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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.

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enFebruary 09, 2024

Preserving Tainted Blood History and Bath Bleeds

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.

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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.

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enJanuary 26, 2024

Shakeup at HFA and a brand new Gene Therapy segment!

It’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on gene therapy (whoo!) - all this and more!

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Join the Movement - Equity for Women with Bleeding Disorders

FAIR Coalition

CHES - Programs for Women with Bleeding Disorders

Take Action Today! - Click HERE

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enJanuary 12, 2024

SNL screws up sickle cell.

We’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We’ll get into it all, AND MORE, on this episode.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I’m Fine and Elite Athletes are presented by @SanofiUS

Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com

Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community.

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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enJanuary 04, 2024

The World Health Organization (WHO) gets it wrong

The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I’m Fine and Elite Athletes are presented by @SanofiUS

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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enDecember 08, 2023

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The Dark Side of Resilience + The Gratitude Game

Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

enNovember 24, 2023

Resisting Change and Holiday Dynamics

Amy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I’m Fine is presented by @SanofiUS

Segment brought to you by Genentech, please visit www.treathemA.com to learn more.

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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enNovember 10, 2023

Introducing PNH: Facts, Fiction & FYI!

The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI.

Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder.

Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner.

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enNovember 03, 2023

Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams

Mosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I’m Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE from Believe Limited.

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WFH statement on the Israel-Palestine crisis

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I’m Fine and Elite Athletes with Hemophilia are presented by @SanofiUS

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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enOctober 27, 2023

Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset

We’re back with another episode of BloodStream featuring Maya Bloomberg’s 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I’m Fine segment with Mark Skinner.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at www.ches.education

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enOctober 13, 2023

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Dr. Akshat Jain and NHL coach David Quinn

Dr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I’m Fine with a spotlight on–leadership. Be careful, leaders, we’re coming for ya!

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Watch Redefining Impossible for free HERE

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Elite Athletes and I’m Fine segments presented by @Sanofi

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enSeptember 25, 2023

Embracing Change in Hemophilia Care and Back to School

Amy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I’m Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us!

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Sickle Awareness Month Resources

Back to School Resources at Steps for Living

Mental Health Matters Too

Watch Redefining Impossible for free HERE

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Elite Athletes segment presented by @Sanofi

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enSeptember 08, 2023

Patrick and Amy’s BDC Recap!

Patrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We’ll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different experiences. Also, we’ll premiere the first Elite Athletes segment that highlights community members from the Redefining Impossible film.

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Watch Redefining Impossible for free HERE

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Elite Athletes segment presented by @Sanofi

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enAugust 25, 2023

Taylor Swift changes Amy’s life, plus a new segment, and other stuff.

Don’t worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I’m Fine. This new segment aims to challenge our “normals” and truly consider the possibilities.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine presented by @Sanofi Take a deeper at LevelsMatter.com.

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enAugust 11, 2023

hematology

NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren

The National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don’t miss this one!

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You can do three practical things to help further the campaign for better treatment for women with bleeding disorders:

1) sign the petition at change.org: Demand Equity in Healthcare for Women

2) Head over to CHES to submit your recommendations for good doctors and hospitals

3) Sign the 'MASAC Document 264' recommendations at hemophilia.org

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enJuly 27, 2023

It’s here: Gene Therapy for Hemophilia A

Patrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders.

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Listen to The Final Summit Season 2 Podcast!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enJuly 14, 2023

Music w/ Max Feinstein and FLOW with Jessica Lauren Richmond

Jessica Lauren Richmond, co-host of the popular FLOW podcast, joins us to discuss all things menstrual health and Amy finally gets to ask –So, how’s your FLOW? We also have James Maple back with a music and self-expression segment that spotlights on community member, Max Feinstein.

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Listen and Subscribe to the FLOW podcast!

Share your FLOW story with us! How's Your Flow Calendly

Tik Tok @howsyourflow

Instagram @howsyourflow

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enJune 23, 2023

flow podcast

World Sickle Cell Day & Sing Me A Story

Join us as we celebrate World Sickle Cell day on June 19th with contributor Maya Bloomberg, the HemeNP and a conversation with hematologist Dr. Mike Callaghan. Great stuff about equity in healthcare, clinical trial participation, the Sing Me a Story organization, and the Denver Nuggets in the finals. Don’t miss it!

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Sing Me A Story

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