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FDA Rare Disease Day 2022

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On March 4, 2022, FDA will join 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’s Rare Disease Day Activities

FDA Public Meeting: FDA will host 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 is “Sharing Experiences in Rare Diseases Together.” 

Patients, patient advocates, researchers and medical product developers may benefit from attending this public meeting on rare disease product development. During presentations and panel discussions various stakeholders will share their perspectives on and experiences in rare disease product development.  

Personal stories about rare diseases

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.

Patient listening sessions 

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.


Eleanor Dixon-Terry
Office of Orphan Products Development
Office of Clinical Policy and Programs
Food and Drug Administration
[email protected]

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