Focus Attention on Rare Diseases
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 28, 2014.
Rare Disease Day at NIH
On February 28, 2014, the National Institutes of Health (NIH) will celebrate the Seventh Annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; and the Genetic Alliance. Rare Disease Day at NIH will be held in the Masur Auditorium (Building 10) from 8:30 a.m. to 5:00 p.m. on Friday. Attendance is free and open to the public.
About Rare Diseases
The National Institutes of Health Office of Rare Diseases Research (ORDR) maintains a list of rare (orphan) diseases, which are generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States. Listed rare diseases affecting the functional GI and motility disorders community include:
- Cyclic vomiting syndrome (CVS)
- Hirschsprung’s disease
- Intestinal pseudo-obstruction
- Levator syndrome
- Rumination disorder
- Short bowel syndrome
For more on past activity regarding the advancement of treatments for Rare Diseases, click here.