A Look at Rare Disease Listening Sessions with NORD and the FDA

Jan. 31, 2020 – This webinar featured Debbie Drell, Director of Membership, at the National Organization for Rare Diseases (NORD), and Andrea Furia-Helms, Director, Patient Affairs Staff at Food and Drug Administration (FDA) discussing their collaboration on Rare Disease Patient Listening Sessions. The listening sessions are facilitated by FDA Patient Affairs Staff and offer patients and caregivers an opportunity to speak directly to FDA staff about what it’s like to live with a specific rare disease. The sessions help FDA staff understand the patients’ perspective about their disease, needed treatment options, and meaningful outcomes.