hemophiliaa

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:

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Check out the work Glanzmann's Research Foundation is doing!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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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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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:

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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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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:

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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 

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Hemophilia A is an X-linked recessive disease primarily affecting males. An estimated 20,000 individuals in the United States have the disease. Conventional standard of care for patients with severe disease is factor VIII administration given prophylactically or to treat bleeding episodes. Almost 30% of patients treated with factor VIII develop neutralizing antibodies known as inhibitors, which require treatment with expensive bypassing agents. Newer approaches to treating hemophilia A include pegylated recombinant factor VIII agents with a longer half-life that allow for reduced dosing, as well as emicizumab, a bispecific antibody therapy that mimics the cofactor activity of factor VIII by binding to and bridging activated factor IX and factor X. In this 4-part CME podcast series, experts will summarize historical challenges in hemophilia A care; discuss how newer treatment options may benefit patients with and without inhibitors; and present strategies to promote shared decision-making and improve patient satisfaction. Additionally, faculty will speak with a patient advocate regarding treatment concerns and communication preferences.