Rare Disease Day takes place worldwide on the last day in February 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.
2016 Event Information
Monday, February 29
8:30 a.m. - 3:30 p.m.
Masur Auditorium, Building 10
National Institutes of Health
Featured Activities: NIH Clinical Center tours, posters, exhibits, art show and presentations
Sponsors: NCATS and NIH Clinical Center
Partners: Food and Drug Administration’s Office of Orphan Product Development and Center for Drug Evaluation and Research’s Rare Disease Program, National Organization for Rare Disorders, Genetic Alliance, Global Genes, EveryLife Foundation for Rare Diseases, and Uplifting Athletes.
About Rare Disease Day
EURORDIS sponsored the first Rare Disease Day in Europe on Feb. 29, 2008. The United States joined the first global observance the following year along with 23 other countries. Visit Rare Disease Day USA and International Rare Disease Day for more information.
About Rare Disease Day at NIH
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 and the Therapeutics for Rare and Neglected Diseases program, 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.
NCATS and Rare Diseases Research
More than 6,500 rare diseases affect humans, of which only a few hundred have any treatment. Although each rare disease affects fewer than 200,000 Americans, in total these illnesses affect an estimated 25 million people in the United States. Less than 5 percent of rare diseases have a treatment.
NCATS is all about getting more treatments to more patients more quickly. The Center tackles rare diseases research through collaborative projects to study the commonalities and underlying molecular causes of these disorders. This approach creates the potential to speed the development of treatments for a number of rare and common diseases at the same time.