Stephanie Fischer Rare Disease Patient & Advocate

Stephanie Fischer

As a rare disease patient and stroke survivor, Stephanie Fischer is passionate about rare disease advocacy. She is a member of the Advisory Board of the Rare and Undiagnosed Network and a Trailblazer of Rare Advocacy in the Rare Advocacy Movement.

She also serves on the Global Genes RARE Impact Grant review committee.

Stephanie recently served as Chief Patient Engagement and Communications Officer at the EveryLife Foundation for Rare Diseases, a nonprofit dedicated to accelerating innovation for rare disease treatments through science-driven public policy.

Prior to joining the Foundation, she spent more than 10 years focused on health policy communication at the Biotechnology Innovation Organization (BIO) and Pharmaceutical Research and Manufacturers of America (PhRMA).  She previously worked for U.S. Representative Jim Greenwood (PA-8) for nine years until his retirement in 2004.

Stephanie has a Bachelor of Arts in Government from Cornell University and resides in Bucks County, Pennsylvania. You can find her on Twitter as @RarePOV.


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