President & CEO of Project Sleep, Julie Flygare, JD will be featured as a speaker on the FDA’s Rare Disease Day Patient Community Panel, taking place on Monday, February 27 at 1:00 – 2:30pm EST. With this year marking the 40th anniversary of the Orphan Drug Act, the FDA’s Rare Disease Day 2023 “Intersections with Rare Diseases – a Patient Focused Event” is dedicated to rare disease patients, their families, care partners, and health care providers.
Tune In to Hear Julie Flygare Speak at FDA Event
Engaging with FDA Session Overview: In this session, members of the rare disease patient community will share their experiences engaging with patient-oriented programs and activities at FDA. FDA staff will present research results using data from FDA Patient engagement sessions. Patient leaders will provide their perspectives on engaging with FDA.
Patient Community Panelists:
Julie Flygare, JD Patient and Patient Organization leader, Project Sleep, Person living with narcolepsy and President & CEO of Project Sleep
Brian Harman Patient Organization leader, United Mitochondrial Disease Foundation, President & CEO of United Mitochondrial Disease Foundation
Katie Jackson Caregiver and Patient Organization leader, Help 4 HD International, CEO of Help 4 HD International, Huntington’s and Juvenile Huntington’s Disease