How is the pandemic affecting people living with rare diseases and their families? How does the U.S. Food and Drug Administration (FDA) respond to ensure that the needs of the rare disease community are met with respect to clinical trials, drug shortages and access to personal protective equipment (PPE)?
National Organization for Rare Disorders (NORD) and FDA will co-host a virtual “listening session,” during which the rare disease community will have the opportunity to share their experience living with a rare disease in the pandemic, and submit questions in advance directly to FDA staff.
When you register, you may submit your questions to FDA regarding their role in responding to the pandemic. You can also express your interest in being one of three patient speakers in this session.
NORD will assist selected patient and caregiver speakers to craft their presentations regarding their experiences during the pandemic with clinical trials, drug shortages and PPE access.
Please register to attend and include your questions for the FDA. Please also indicate whether you are interested in participating as one of the three designated patient speakers.
FDA GUEST SPEAKERS:
Janet Maynard, M.D., M.H.S.
Director, Office of Orphan Products Development
Kathleen Donohue, M.D.
Director (Acting), Division of Rare Disease and Medical Genetics Center for Drug Evaluation
M. Khair ElZarrad Ph.D., M.P.H.
Deputy Director, Office of Medical Policy Center for Drug Evaluation and Research
Aftin Ross, M.S.E., Ph.D.
Senior Project Manager/Senior Science Health Advisor All-Hazards Readiness Response and Cybersecurity (ARC) OST, CDRH
National Organization for Rare Disorders