As a rare disease patient and stroke survivor, Stephanie Fischer is passionate about engaging patients and their families in drug development and health policy so that they feel empowered to engage legislators and regulators. She serves on the Executive Committee of the Rare Advocacy Movement and on the Advisory Board of the Rare and Undiagnosed Network. Stephanie recently concluded a year of strategic communications consulting at Global Genes, responsible for increasing community engagement on social media with relevant and timely content. She previously 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.
Stephaine is connected to many Rare Disease communities. I know her through her work in the ALS community. She seeks to understand the disease burden of als for the patient and care giver. She includes the patient voice and perspective in all she does including panels and with legislators at the State and Federal level. — Mary Kay
I’m a Patient Leader