BloodStream

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

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.

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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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.

Subscribe to PNH: Facts, Fiction & FYI.

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.

Show Notes:

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The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I'm Fine and Elite Athletes with Hemophilia 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

WFH statement on the Israel-Palestine crisis

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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.

Show Notes:

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The BloodStream Podcast

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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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!

Show Notes:

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The BloodStream Podcast

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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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!

Show Notes:

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Back to School Resources at Steps for Living

Sickle Awareness Month Resources

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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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.

Show Notes:

Subscribe:

The BloodStream Podcast

Watch Redefining Impossible for free HERE

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Elite Athletes segment presented by @Sanofi

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook

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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.

Show Notes:

Subscribe:

The BloodStream Podcast

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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BloodStreamMedia.com

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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!

Show Notes:

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The BloodStream Podcast

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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BloodStream on Facebook

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Our guest today is Dolores Dumas. Dolores is a 73-year-old living with PK deficiency, and was diagnosed as a teen with nonspherocytic hemolytic anemia. During a visit with a new hematologist, she received a definitive diagnosis of PK deficiency. Dolores feels grateful that she finally has a name for her condition.

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community.  Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

TRANSPARENCY STATEMENT 

Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host Rachel Grace and guest Dolores Dumas have been compensated for her time.