Rare Disease Day takes place worldwide to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, the National Institutes of Health (NIH)'s National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. This year’s global theme is "Research" continuing from 2017, and the slogan is “Patients are not only subjects but also proactive actors in research.”
Each year since 2010, the slogan for NIH’s event has been “Patients & Researchers — Partners for Life.” This slogan aligns with NCATS’ philosophy that researchers must work closely with patients, families, caregivers and advocacy groups to maximize the chances for success in advancing rare diseases research. This philosophy has been put into practice in NCATS’ Rare Diseases Clinical Research Network, Therapeutics for Rare and Neglected Diseases program, and the Genetic and Rare Diseases Information Center, among other efforts.
The goals of Rare Disease Day at NIH are to:
- Demonstrate and reiterate the NIH commitment to rare diseases research to help patients.
- 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
More information is available via the NIH's website.