Description:
In this episode, Patrick and Natalie review some advocacy best practices, take a look at the increasingly popular cryotherapy, share one mom's (anonymous) story of addiction, hemophilia and family, and during the Sit-Down segment, Patrick speaks with NHF board member Jorge de la Riva about how NHF's board works, his views on health and social advocacy, and his family's personal story of being introduced to hemophilia. All this and more on Episode 9 of BloodStream! Click "Episodes" above to stream or download.
Sponsors for Episode 8:
Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website
Supporting Sponsor: Shire Link to BleedingDisorders.com
Trending Topics:
EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A (Link)
FDA Gives Breakthrough Designation to Hemophilia Gene Therapy (Link)
Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients (Link)
LA Kelley Launches a New Edition of Raising a Child With Hemophilia (Link) Learn more about all of LA Kelley’s offerings (Link)
Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)
HFA 2017 Policy & Government Relations Internship (Link)
New and Improved Blood Brotherhood Forum from HFA (Link)
Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)
Like Share Comment:
Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link to Article.
Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link to Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).
Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link to Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign
Sit-Down Segment with NHF Board Member Jorge de la Riva
Jorge on Twitter Link
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