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EVENT DESCRIPTION  
 
Event Type:  Annual Event (This is an NIH Science event)
 
Title:  Rare Disease Day at NIH
 
Description:  Rare diseases affect an estimated 25 million people in the United States. Rare Disease Day at NIH, which takes place on Monday, Feb. 27, 2017, aims to raise awareness about rare diseases, affected patients, and research collaborations addressing rare disease challenges.

Sponsored by NCATS and the NIH Clinical Center, the event features presentations from NIH leadership, leading scientists, government representatives, patient advocacy groups, and caregivers; posters and exhibits; an art show; and tours of the NIH Clinical Center. This event, which is open to the public, will take place from 8:30 a.m. to 4:00 p.m. in Masur Auditorium in Building 10 on the NIH main campus in Bethesda, Maryland. There is no admission fee, and it is appropriate for patients and patient advocates, health care providers, researchers, industry representatives, and government employees.

Speakers include Christopher P. Austin, M.D., Director, NCATS, NIH; Petra Kaufmann, M.D., M.Sc., Director, Office of Rare Diseases Research and Division of Clinical Innovation, NCATS, NIH; Anthony Fauci, M.D., Director, National Institute of Allergy and Infectious Diseases, NIH; Max G. Bronstein, Senior Director, Advocacy & Science Policy at EveryLife Foundation for Rare Diseases; Scott E. Shirley, Executive Director, Uplifting Athletes; Nicole Boice, Founder and CEO, Global Genes; Brian P. Brooks, M.D., Ph.D., Principal Investigator, Unit on Pediatric, Developmental and Genetic Opthalmology, National Eye Institute and Adjunct Faculty, National Human Genome Research Institute, NIH; Gayatri Rao, M.D., J.D., Director, Office of Orphan Products Development, Food and Drug Administration (FDA); Jonathan Goldsmith, M.D., Associate Director, Rare Disease Program, Office of New Drugs, Center for Drug Evaluation and Research, FDA; and Sharon Terry, M.A., President and CEO, Genetic Alliance.

Learn more at https://ncats.nih.gov/rdd or register now at http://bit.ly/1S2v4vx. Be sure to follow the event on social
 
Event URL:  https://ncats.nih.gov/rdd
 
Videocast:  Event will be videocast LIVE on the Web
 
Videocast URL:  http:// http://bit.ly/2hnIGm7
  Event will be available in the videocast ARCHIVE
 
Special Instructions:  Reservations or registration required for this event
More information will be available prior to the event
 
  To arrange sign language interpretation for an event go to the Office
of Research Services (ORS) Interpreting Service Requests web page.
 

EVENT DATE/TIME  
 
Date/Time: 
Monday, February 27, 2017   8:30am - 4:00pm Add To Outlook Calendar     Add To iCal Calendar     Add To Entourage Calendar
 
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EVENT SPEAKER(S)  
 
Name:   Christopher P. Austin, M.D.
Title:   Director
Organization:   National Center for Advancing Translational Sciences, NIH
 
Name:   Petra Kaufmann, M.D., M.Sc.
Title:   Director, Office of Rare Diseases Research and Division of Clinical Innovation
Organization:   National Center for Advancing Translational Sciences, NIH
 
Name:   Anthony Fauci, M.D.
Title:   Director
Organization:   National Institute of Allergy and Infectious Diseases, NIH
 
Name:   Max G. Bronstein
Title:   Senior Director, Advocacy & Science Policy
Organization:   EveryLife Foundation for Rare Diseases
 
Name:   Scott E. Shirley
Title:   Executive Director
Organization:   Uplifting Athletes
 
Name:   Nicole Boice
Title:   Founder and CEO
Organization:   Global Genes
 
Name:   Sharon Terry, M.A.
Title:   President and CEO
Organization:   Genetic Alliance
 
Name:   Gayatri Rao, M.D., J.D.
Title:   Director, Office of Orphan Products Development
Organization:   Food and Drug Administration
 
Name:   Jonathan Goldsmith, M.D.
Title:   Associate Director, Rare Disease Program, Office of New Drugs, Center for Drug E
Organization:   Food and Drug Administration
 
Name:   Brian P. Brooks, M.D., Ph.D.
Title:   Principal Investigator, Unit on Pediatric, Developmental and Genetic Opthalmolog
Organization:   National Eye Institute; National Human Genome Research Institute
 

EVENT SPONSOR(S)  
 
Organization(s):  National Center for Advancing Translational Sciences, NIH; [NIH] Warren Grant Magnuson Clinical Center (CC)
 

EVENT LOCATION  
 
Location:  On the main NIH Campus
Building:  Building 10 (Clinical Center)
Room:  Masur Auditorium
 
Street Address:  10 Center Drive
City:  Bethesda
State:  Maryland
Zip Code:  20892
 

EVENT CONTACT(S)  
 
Name:   Kimberly Potter
E-mail:   kimberly.potter@icfi.com
Phone:   703.934.3000
 
 
 
 
 
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