Overview
Sponsored by the National Center for Advancing Translational Sciences 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 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 Feb. 28, 2019, from 8:30 a.m. to 4:00 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:

  • Collective research models for rare diseases.
  • Patient registries.
  • Rare cancer research initiatives.
  • No disease left behind, no patient left behind.
  • Posters and exhibits by rare disease groups and researchers.
  • Artwork, videos, and tours of the NIH Clinical Center and National Library of Medicine.

New this year will be a presentation of the first ever Zebbie award for the NCATS Rare Diseases are Not Rare! Challenge.

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 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.

Event participants and partners include representatives from the Alpha-1 Foundation; the American Partnership for Eosinophilic Disorders; the Barth Syndrome Foundation; Beyond the Diagnosis; the Campaign Urging Research for Eosinophilic Disease; the Consortium of Eosinophilic Gastrointestinal Disease Researchers; Count Me In; the Developmental Synaptopathies Consortium; the Eosinophilic Family Coalition; the EveryLife Foundation for Rare Diseases; Genetic Alliance; Global Genes®; the Inherited Neuropathies Consortium; the International Rare Diseases Research Consortium; Massachusetts General Hospital; My Pediatric and Adult Rare Tumor Network; the National Heart, Lung, and Blood Institute; Rare Disease Legislative Advocates; Sarcoma Alliance for Research through Collaboration; TargetCancer Foundation; the Tuberous Sclerosis Alliance; and the Vasculitis Foundation.

 

NIH