NIH Hosts Rare Disease Day Event on March 1, 2018
Join the conversation on advancing gene therapy and research collaborations
For Immediate Release
Tuesday, Feb. 20, 2018
Contacts:
NCATS Communications
bobbi.gardner@nih.gov, 301-435-0888
NIH Clinical Center
molly.freimuth@nih.gov, 301-594-5789
Why/What:
Several thousand rare diseases affect an estimated 25 million people in the United States. Only a few hundred of these diseases have an approved treatment. On March 1, 2018, the National Institutes of Health (NIH) will host a Rare Disease Day event and open its doors to public and private researchers, patients and their support organizations, policy makers and other members of the community. Together, attendees will raise awareness about rare diseases, the people they affect, and opportunities for new and better treatments.
The event will feature presentations, interactive panel discussions, posters, an art exhibit, videos and tours of the NIH Clinical Center — the nation’s research hospital where scientists are studying more than 500 rare diseases in partnership with nearly 2,250 patients.
- Agenda: https://events-support.com/Documents/RDD_NIH_2018_Agenda.pdf (PDF - 170KB)
- Watch the event live: https://videocast.nih.gov/summary.asp?live=26851&bhcp=1
When/Where:
March 1, 2018
8:30 a.m. to 4:00 p.m.
NIH Clinical Center (Building 10), Masur Auditorium, 10 Center Drive, Bethesda, Maryland
Who:
The event is sponsored by the NIH National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center. Partners include: The Children’s Inn at NIH, Food and Drug Administration, National Organization for Rare Disorders, Genetic Alliance, Global Genes®, EveryLife Foundation for Rare Diseases, Uplifting Athletes, Alpha-1 Foundation, Batten Disease Support and Research Association, The Calliope Joy Foundation, Children's Tumor Foundation, Curing Retinal Blindness Foundation, Erdheim-Chester Disease Global Alliance, The Foundation for Prader-Willi Research, Lysosomal Disease Network, and the Vasculitis Foundation.
Featured Speakers:
- Rep. Leonard Lance (NJ), co-chair, Congressional Rare Disease Caucus
- Francis S. Collins, M.D., Ph.D., director, NIH
- Christopher P. Austin, M.D., director, NCATS
- James K. Gilman, M.D., chief executive officer, NIH Clinical Center
Press: Members of the media should contact Molly.Freimuth@nih.gov or Bobbi.Gardner@nih.gov for more information and to discuss interview, filming and photography opportunities.
About the National Center for Advancing Translational Sciences (NCATS): NCATS conducts and supports research on the science and operation of translation — the process by which interventions to improve health are developed and implemented — to allow more treatments to get to more patients more quickly. For more information about how NCATS is improving health through smarter science, visit https://ncats.nih.gov.
About the NIH Clinical Center: The NIH Clinical Center is the clinical research hospital for the National Institutes of Health. Through clinical research, clinician-investigators translate laboratory discoveries into better treatments, therapies and interventions to improve the nation's health. More information: https://clinicalcenter.nih.gov.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit https://www.nih.gov.
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