Rare Disease Day Set, Feb. 28

About 7,000 rare diseases affect people and only a few hundred of those have any treatment. Although each rare disease affects fewer than 200,000 in the United States, in total, these illnesses affect an estimated 30 million individuals in this country. On Friday, Feb. 28, NIH will host an event to raise awareness about these diseases, the people they affect and research collaborations that strive to advance new treatments. 

Rare Disease Day at NIH announcement

Sponsored by the National Center for Advancing Translational Sciences and the Clinical Center, Rare Disease Day at NIH will take place from 8:30 a.m. to 4:30 p.m. in Kirschstein Auditorium, Bldg. 45. Admission is free and open to the public.

The event will feature personal and scientific stories from patients, advocates and researchers, as well as interactive panel discussions on shortening the diagnostic odyssey, individualized therapies and personalized medicine and improving access to rare diseases information. Other highlights include inspiring TED-style talks, an NIH Town Hall question-and-answer session, NIH clinical trial resources, posters and exhibits by rare disease groups and researchers, networking opportunities and tours of the Clinical Center and the National Library of Medicine. 

The event marks the 10th Rare Disease Day at NIH, an important milestone that conveys the dedication and commitment of NCATS, the Clinical Center and other parts of NIH to advance research and develop treatments in collaboration with rare disease patients, families and advocates, said Dr. Alice Chen Grady, a program officer in the NCATS Office of Rare Diseases Research who leads the RDD planning committee.

Learn more about the event, view the agenda and register at https://ncats.nih.gov/rdd. Follow activities on social media at #RDDNIH and download the free NIH NCATS Events app from your phone’s app store. 

Prior to the event, NIH is hosting a Twitter chat on rare diseases on Friday, Feb. 21, from 2 to 3 p.m. The chat will feature NIH director Dr. Francis Collins, NIH staff and representatives from the rare diseases advocacy community. Follow @ncats_nih_gov and join the conversation using #NIHchat.