IFOPA Podcast Series

Author: IFOPA

The International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) serves families living with the ultra-rare genetic disease fibrodysplasia ossificans progressiva, as well as researchers and health care providers studying and treating this disease. The IFOPA is a US-based nonprofit organization whose mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. You can find us online at ifopa.org.
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Language: en

Genres: Business, Life Sciences, Non-Profit, Science

Contact email: Get it

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Now I Have Found My Voice
Tuesday, 26 November, 2024

IFOPA Executive Director Michelle Davis recently chatted with FOP Community Member Erin Danzer. Erin is a member of the EveryLife Foundation's YARR (Young Adult Rare Representatives) Program and in February, Erin & Michelle attended the EveryLife Foundation's Rare Disease Week on Capitol Hill. While that experience and the YARR program have taught Erin about legislative advocacy, you'll hear in this podcast how Erin has found her voice as an advocate for both her and the FOP community. They discuss advocacy at school, the doctor's office, home, online, in Washington DC, and more.