FDA-NIH Rare Disease Day 2025

Thursday, February 27, 2025, 10:00am to Friday, February 28, 2025, 4:00pm (registration required)

NIH Natcher Conference Center (Building 45)

Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. This year, NIH's National Center for Advancing Translational Sciences (NCATS) and the US Food and Drug Administration (FDA), both agencies within the Department of Health and Human Services, will sponsor a shared Rare Disease Day event as part of this global observance. FDA-NIH Rare Disease Day aims to provide the rare disease community — patients, caregivers, families, patient advocate groups, researchers, clinicians, health care providers, and trainees/students — with information relevant to their lived experiences, including activities by FDA and NIH that promote research and product development for this underserved population.

The goals of FDA-NIH Rare Disease Day are to:

Demonstrate the NIH and FDA commitment to advancing research and regulatory support for people affected by rare diseases.
Highlight NIH and FDA 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 patients living with a rare disease, their caregivers, and their communities.

FDA-NIH Rare Disease Day seeks to bring together a broad audience including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives, and government staff. The event will feature panel discussions, rare diseases stories, in-person exhibitors and scientific posters, and an art exhibition. It is free and open to the public.