Thursday, January 31, 2019

Rare Disease Day Celebrations for February 2019

Editor's Note: Rare disease day is celebrated on February 28th of each year. Rare diseases are defined as "any disease or condition that affects fewer than 200,000 people in the United States." Please join us as we learn more about craniofacial rare diseases. Please mark your calendars for these events hosted by NIH and Global Genes. 

Rare diseases affect an estimated 30 million people in the United States. On Feb. 28, 2019, NIH will host an event to raise awareness about these diseases, the people they affect, and current research collaborations.

Sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center (CC),Rare Disease Day at NIH will take place from 8:30 a.m. to 4 p.m. ET in the Main Auditorium of the Natcher Conference Center in Building 45 on the NIH main campus in Bethesda, Maryland. The event will feature interactive panel discussions on collective research models for rare diseases, patient registries, rare cancer research initiatives, and "no disease left behind, no patient left behind." New this year will be a presentation of the first ever Zebbie award for the NCATS Rare Diseases Are Not Rare! Challenge. Other highlights include posters and exhibits by rare disease groups and researchers as well as artwork, videos, networking opportunities and tours of the NIH Clinical Center.

Admission is complimentary and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

Prior to the event, on Feb. 22, 2019, NIH will host a Twitter chat on rare diseases from 1-2 p.m. ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D., NCATS Director Christopher P. Austin, M.D., and CC CEO James K. Gilman, M.D., as well as representatives from the rare diseases advocacy community. Join in the conversation using #NIHchat and follow @ncats_nih_gov. Learn more at and register at

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