Community Partner Events & Fundraisers

Rare Disease Day at NIH 2023

Tuesday, February 28, 2023
9:00 AM – 5:00 PM EST

This year’s event will be both virtual and in person at the Natcher Conference Center in Bethesda, MD. A livestream will be available via NIH VideoCast with the event archived for replay afterward. Learn more and register.

The National Institutes of Health (NIH)’s National Center for Advancing Translational Sciences (NCATS) will co-sponsor this year’s Rare Disease Day (RDD) at NIH event with the NIH Clinical Center.

This event aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations that address scientific challenges and advance research for new treatments. RDD at NIH 2023 is a free event that is open to the public, including patients, patient advocates, health care providers, researchers, trainees, students, industry representatives, and government staff.


Rare Disease Day at FDA 2023

Monday, February 27, 2023
9:00 AM – 4:45 PM EST

The FDA will host Rare Disease Day, a virtual public meeting in global observance of Rare Disease Week. This year’s theme is “Intersections with Rare Diseases – A patient focused event.” Participants will have the unique opportunity to:

  • Hear directly from the FDA on initiatives to advance medical product development for rare diseases.
  • Engage with the FDA to provide your perspectives as a patient, caregiver or family member.
  • Understand considerations and challenges associated with clinical trials in small populations.
  • Hear from medical students on rare disease education for medical professionals.

Learn more and register.