Description of Collaborative Activity: |
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, National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (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 under way 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. |
