Rare Disease Day 2023
This annual worldwide event was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. It provides an energy and focal point to raise awareness among policymakers and the public about rare diseases and their impact on patients' lives.
Since 2011, NCATS and the NIH Clinical Center have sponsored Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.
The goals of Rare Disease Day at NIH are to:
- Demonstrate the NIH commitment to helping people with rare diseases through research.
- Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
- Initiate a mutually beneficial dialogue among the rare diseases community.
- Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
- Shine a spotlight on stories told by people living with a rare disease, their families and their communities.
- Bring together a broad audience including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives, and government staff.
Rare Disease Day at NIH will be held in person at NIH Main Campus (Natcher Conference Center) and virtually via NIH VideoCast with the event archived for replay afterward. The agenda features panel discussions, rare diseases stories, exhibitors and scientific posters. The event is free and open to the public.
For more info, visit ncats.nih.gov/news/events/rdd.