Overview
Sponsored by the National Center for Advancing Translational Sciences (NCATS) and Clinical Center (CC) 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 under way 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 take place on Friday, February 28, 2020, from 8:30 a.m. to 4:30 p.m. in the main auditorium of the Natcher Conference Center in Building 45 on the main NIH campus in Bethesda, Maryland. 

This year’s event will feature interactive panel discussions and more:

  • Individualized therapeutic approaches and personalized medicine.
  • The diagnostic odyssey.
  • Expanding and improving access to rare diseases knowledge.
  • Sharing rare stories through TED-style talks.
  • NIH Town Hall question and answer session.
  • NIH Clinical Trial Resources.
  • Posters and exhibits by rare disease groups and researchers.
  • Artwork and tours of the NIH Clinical Center and National Library of Medicine.

Please note that participants may be photographed or filmed as part of the event for use by the NIH and its designees for all purposes of education, instruction, or public information including publication or broadcast, print, television, radio, the internet, or promotional material. If you do not wish to be photographed, please indicate so on your registration form.

Admission is free, and the event is open to the public, including patients, patient advocates, health care providers, researchers, industry representatives, and government employees. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans.

Partners in Planning

Planning committee members include representatives from NCATS, the CC, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Cancer Institute, the National Heart, Lung, and Blood Institute, the National Human Genome Research Institute, the National Institute of Neurological Disorders and Stroke, the National Organization for Rare Disorders, the Rare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups, the Food and Drug Administration, and The Children’s Inn at NIH.

NIH