Rare Disease Day at NIH to feature community building and research advances

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Why/What

Rare diseases affect an estimated 25 million people in the United States. On Feb. 27, 2015, the National Institutes of Health will recognize Rare Disease Day with a free event to raise awareness about these diseases, the challenges that patients face, and the importance of research collaborations. The event will feature tours; posters and exhibits; and presentations on successful team and community building, the critical role of technology transfer and strategic alliances, and advances from the National Center for Advancing Translational Sciences’ (NCATS) Rare Diseases Clinical Research Network.

Agenda: https://events-support.com/Documents/Agenda_RDD15.pdf (PDF - 178KB)

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Registration: https://events-support.com/events/NIH_Rare_Disease_Day/page/686

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Watch the event live: https://videocast.nih.gov/summary.asp?live=14248&bhcp=1.

When/Where

February, 27, 2015
8:30 a.m. – 5 p.m.
NIH Clinical Center (Building 10) Masur Auditorium, 10 Center Dr., Bethesda, Maryland.

Who

The event is hosted by NCATS and the NIH Clinical Center. Speakers include Congressman Leonard Lance, (NJ-07), co-chair of the Rare Disease Caucus; NIH Director Francis S. Collins, M.D., Ph.D.; NCATS Director Christopher P. Austin, M.D.; and NIH Clinical Center Director John I. Gallin, M.D. Partner organizations include the U.S. Food and Drug Administration, National Organization for Rare Disorders, Genetic Alliance, Global Genes and Uplifting Athletes.

Where

Those who are interested in covering the event or learning more about rare disease clinical trials underway should please contact the communications representatives above in advance.

Members of the press are welcome to attend. Those who are interested in covering the event or learning more about rare disease clinical trials underway should please contact the communications representatives above in advance.

The National Center for Advancing Translational Sciences is a distinctly different entity in the research ecosystem. Rather than targeting a particular disease or fundamental science, NCATS focuses on what is common across diseases and the translational process. The Center emphasizes innovation and deliverables, relying on the power of data and new technologies to develop, demonstrate and disseminate improvements in translational science that bring about tangible improvements in human health. For more information, visitwww.ncats.nih.gov.

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: http://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 www.nih.gov.

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