On this page:
- FDA Rare Disease Day activities
- Personal stories about rare diseases
- Patient Listening Sessions
On March 4, 2022, FDA joined the global observance of Rare Disease Day, which was created to raise awareness about the 7,000 known rare diseases, many of which have no treatment. Although each rare disease affects fewer than 200,000 Americans, in total, these diseases affect an estimated 30 million people in the United States.
FDA Public Meeting: FDA hosted a virtual public meeting on March 4, 2022 to join the global observance of Rare Disease Day. The theme for FDA’s Rare Disease Day was “Sharing Experiences in Rare Diseases Together.” During presentations and panel discussions various stakeholders will share their perspectives on and experiences in rare disease product development.
- Public Meeting - FDA Rare Disease Day 2022: Sharing Experiences in Rare Diseases Together
- Meeting Materials
- Meeting Transcript
Patients with rare diseases offer a unique perspective about their condition and their experience is important to understand to help advance therapies for rare diseases. See Personal stories about rare diseases for videos capturing patients’ stories and FDA experts’ work on rare diseases.
Listening sessions are one of many ways patients, caregivers and their advocates can share their experience with a disease or condition by talking directly with FDA staff. See FDA patient listening sessions for more information.
Office of Orphan Products Development
Office of Clinical Policy and Programs
Food and Drug Administration