February 28, 2020
8:30 a.m. – 4:30 p.m. ET
Natcher Conference Center (Main Auditorium), Building 45, Bethesda, MD
Sponsored by NCATS and the NIH Clinical Center
Speakers include Noah Victoria, a rare disease patient who will share her story; founders of several organizations dedicated to rare diseases treatment; researchers and staff at children’s hospitals across the United States; and leadership from NCATS and other NIH Institutes and Centers.
The event will feature personal and scientific stories about rare diseases and interactive panel discussions on individualized therapies and personalized medicine for rare diseases, shortening the often lengthy and complicated journey to find a diagnosis, and expanding and improving access to rare diseases information. Other highlights include an NIH Town Hall Question and Answer Session, posters and exhibits, artwork, and tours of the NIH Clinical Center.