BloodStream

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

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: Subscribe: 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

A good one this week! Erin Willis, associate professor at the University of Colorado joins us to discuss the increasingly popular use of patient influencers in pharmaceutical marketing. The goal of her research is to explore how message design can influence people's understanding about their health and choices. Also, Jessica Richmond is back with another segment of The Well as she investigates how the past informs the present. 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 Genentech has local Clinical Education Managers (CEMs) who offer one-on-one support throughout your entire hemophilia journey. To get in contact with a CEM, visit www.TalkToACEM.com Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

Patrick shares life post ankle surgery and wonders if everything from now on will be impacted by hemophilia. Plus, a fantastic interview with Hemophilia of Gerogia's Director of Advocacy, Michelle Conde AND members of Glanzmann's Research Foundation, Peter Z and Taylor Anne. We'll cap the episode with another Let's Talk mental health segment on acknowledging your past. Show Notes: Subscribe: The BloodStream Podcast Check out the work Glanzmann's Research Foundation is doing! 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

On the heels of National Coming Out Day, BloodStream is joined by Dr. Nathan Connell, Clinical Chief of Hematology at Brigham and Women's Faulkner Hospital to discuss LGBTQ+ health issues in the bleeding disorder community. Plus, Patrick reconnects with Annelise Ellis, longtime friend and fellow person with a bleeding disorder, as she shares with us her story of how von Willebrand disease impacted her first pregnancy, labor, and delivery. Show Notes: Subscribe: 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 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

James Maple, sitting in for Amy, and Patrick present the audio from BloodStream's Diversity, Equity, and Inclusivity panel during National Hemophilia Foundation's Bleeding Disorders Conference as well as the latest from the Let's Talk mental health segment. Plus, news from ICER on gene therapy! Show Notes: Subscribe: The BloodStream Podcast Article: Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement 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 - Sanofi, visit ShareYourWhy.com to meet the CoRe team and hear stories from the hemophilia community. - Pfizer, if you have sickle cell disease, how often do painful crises have you visiting the doctor? Learn more at ClinicalTrialSCD.com Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

BloodStream welcomes back frequents collaborators, Cazandra Campos-Macdonald & Laurence Woollard. Caz shares an emotional update on her chronic pain and mental health, while Laurence tells us about the impressive recent episode of Global Hemophilia Report featuring women with bleeding disorders. Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast Listen to the latest from BloodStream's FLOW podcast Listen to the Pain Podcast Brought to you in party by Genentech #Genentech #hemophiliacommunity #BleedingDisorders #Hemophilia #HemophiliaA #Healthcare Brought to you in part by CSL Behring. To learn more, check out www.HemEvolution.com If you have sickle cell disease, how often do painful crises have you visiting the doctor? Pfizer is now enrolling a research study of an investigational medicine that may help to prevent pain crises caused by sickle cell disease. If you have seen a healthcare provider for 2 to 10 sickle cell crises in the past year, you may be able to participate. To speak with the study team, visit ClinicalTrialSCD.com. With your help, we can pursue new treatment options for sickle cell disease. Learn more at ClinicalTrialSCD.com or click the link in the show notes. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter