What does taking ownership of your bleeding disorder look like? Patrick shares his thoughts and NHF's education staff, Brendan Hayes and Heather Hicks join us to debut a new program that could change the game. Also, we introduce Maya Bloomberg, a certified nurse practitioner, who is addressing blood disorders through social media. A can't miss episode!

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Take control of your health care with NHFs Own Your Path program!

This app-based program will provide you with information to navigate life with a bleeding disorder. Being able to stay on top of your treatment is easier if you are able to manage your stress, get enough sleep, move your body, and stay on top of your nutrition.

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is made possible by Genentech.

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We recognize and celebrate Rare Disease Day on BloodStream! A day to raise awareness, share your story, and appreciate the community we find ourselves in. We'll also get an interview with community member, Murai Johnson, to honor of Black History Month and Josh is back with another Let's Talk: Living in the Almost.

About The Infected Blood Inquiry - The Haemophilia Society

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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On this bonus episode, we continue to honor Black History Month with interviews with blood brother, Bobby Wiseman, and Dima Henricks, sickle cell advocate and founder of #ThroughThePain. Plus, a warning for the hemophilia community with care from Patrick and Amy.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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BloodStream welcomes back NHF Vice President of Public Policy, Nathan Schaefer to talk everything Washington Days and advocacy! Plus, an interview with community member and social worker, Mosi Williams and a new segment of The Well. Oh, and Amy and Patrick share some personal advocacy wins and bummers too!

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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BloodStream honors Black History Month with a series of interviews with community members and KOL's Join us for this pop-up episode with Connie Montgomery as she shares her perspective with James Maple. Plus, Josh Bragg is back with another Let's Talk featuring community member, Mike Hargett.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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We've got Dr. Steven Pipe with us to discuss the first gene therapy approved for hemophilia B, HEMGENIX. As the lead investigator of the HEMGENIX trial, Dr. Pipe details what patients need to know about HEMGENIX and what questions to consider when speaking with their hematologist. A must listen episode!

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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A legislative package was approved at the end of 2022 with several wins and several disappointments for the rare disease community–we talk about it! Also, we welcome Aditi Kantipuly, a Research Collaborator for the CDC for a chat about health equity. Plus, Jessica Lauren Richmond is back with The Well, a segment featuring 5 steps to make your new year's resolutions stick.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

As part of H.R. 2617, Congress delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought for and will help speed efforts to develop effective therapies and expand access to care.

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It's the final episode of 2022! Patrick gives an update on his ankle journey, through the good and the bad, PLUS a terrific interview with NHF CEO and President, Dr. Len Valentino. We'll close with a Let's Talk segment on focus on trauma, depressive swings featuring our own, Patrick James Lynch.

Watch Jonah Hill's Stutz on Netflix

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Listen in to Let's Talk, a monthly segment with your host, Josh Bragg. Let's Talk shares tips on

how to care for your own or someone you love's mental health and strives to eliminate the

stigma associated with this discussion within the bleeding disorders community. Visit

Letstalkmh.com and click Resources.

Brought to you by Sanofi

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The first gene therapeutic for hemophilia (specifically for hemophilia B) was approved last week, and with that –a new era of treatment options has begun! Amy and Patrick share first reactions to the approval news and toss out opinions on how this news may impact our community in 2023. We also have Michelle Rice with us to share how her work is continuing to bring access to treatment for rare disease patients. Plus, a new segment of The Well on Relationships.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia's history

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In a terrific turn of events, Patrick got an invite to the prestigious WFH Gene Therapy Roundtable featuring a number of experts discussing the challenges and opportunities presented by gene therapy. So that means Patrick will report back all the key takeaways! And, it's gratitude season, so naturally we share what we are most thankful for this year. Plus, a new Let's Talk about dating and relationships.

Show Notes:

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The BloodStream Podcast

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia's history

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