BloodStream

Patrick and Amy discuss the reaction to Patrick's viral Warning to the Community and we can all agree that we struck a nerve! Also, our first segment with Maya Bloomberg, the @HemeNP where she discusses anemia. Plus, Blood Brother John Christen sharing his work, Bleeding China and the latest installment of Let's Talk. Show Notes: Subscribe: The BloodStream Podcast Check out Bleeding China on Substack by Blood Brother, John Christen Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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! Show Notes: Subscribe: The BloodStream Podcast 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. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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 Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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! Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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! Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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. Show Notes: Subscribe: The BloodStream Podcast 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. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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 Show Notes: Subscribe: The BloodStream Podcast 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

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. Show Notes: Subscribe: The BloodStream Podcast 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter