Sponsored by the National Center for Advancing Translational Sciences (NCATS) and Clinical Center at the National Institutes of Health (NIH), Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations underway to address scientific challenges and to advance new treatments. The goals 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 public and private researchers, patients, patient advocates, and policymakers.
  • Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
  • Put a face on rare diseases by sharing stories of patients, their families, and their communities.

Rare Disease Day at NIH will be held virtually on Monday, March 1, 2021, from 10:30 a.m. to 5:30 p.m. EST.

This year’s event will feature interactive panel discussions, rare stories through TED-style talks, and more.

The event is free and open to the public, including patients, patient advocates, healthcare providers, researchers, trainees, students, industry representatives, and government employees.

Partners in Planning

Planning committee members include representatives from NCATS, the NIH Clinical Center, the National Cancer Institute, the National Heart, Lung, and Blood Institute, the National Human Genome Research Institute, the National Organization for Rare Disorders, the Rare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups, the U.S. Food and Drug Administration, and The Children’s Inn at NIH.

U.S. Department of Health and Human Services NIH