|Date & Time||1 March 2021 - 16.30 CET|
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. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. 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 of Rare Disease Day at NIH 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.
Planning committee members include representatives from NCATS, 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 (FDA) and The Children’s Inn at NIH.