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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 Thursday, March 1, 2018, aims to raise awareness about rare diseases, the people they affect, and research collaborations addressing rare disease challenges.

Sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center, the event features presentations from NIH leadership, leading scientists, government representatives, patient advocacy groups, patients and caregivers; posters and exhibits; 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.

Learn more at https://ncats.nih.gov/rdd or register now at http://bit.ly/1FtC7YM.

Be sure to follow the event on social media at #RDDNIH and don't miss our Twitter chat on rare diseases on Feb. 23, 2018, 1-2 p.m. ET.

 
Event URL:  https://ncats.nih.gov/rdd
 
Videocast:  Event will be videocast LIVE on the Web
 
Videocast URL:  http://bit.ly/2DiMb8S
  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: 
Thursday, March 01, 2018   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:   NCATS, NIH
 
Name:   James K. Gilman, M.D.
Title:   CEO
Organization:   NIH Clinical Center
 
Name:   Petra Kaufmann, M.D., M.Sc.
Title:   Director, Office of Rare Diseases Research
Organization:   NCATS, NIH
 
Name:   Anne Pariser, M.D.
Title:   Deputy Director, Office of Rare Diseases Research
Organization:   NCATS, NIH
 
Name:   Chester B. Whitley, Ph.D., M.D.
Title:   Principal Investigator
Organization:   Lysosomal Disease Network
 
Name:   Marshall Summar, M.D.
Title:   Chairman of the Board of Directors
Organization:   National Organization of Rare Disorders
 
Name:   Margie Frazier, Ph.D., LISW-S
Title:   Executive Director
Organization:   Batten Disease Support and Research Association
 
Name:   Theresa V. Strong, Ph.D.
Title:   Co-Founder and Director of Research Programs
Organization:   Foundation for Prader-Willi Research
 
Name:   Salvatore La Rosa
Title:   Vice President, Research and Development
Organization:   Children’s Tumor Foundation
 
Name:   Kathleen Brewer
Title:   Founder and President
Organization:   Erdheim-Chester Disease (ECD) Global Alliance
 
Name:   James O’Leary, M.B.A.
Title:   Chief Innovation Officer
Organization:   Genetic Alliance
 
Name:   Philip John (P.J.) Brooks, Ph.D.
Title:   Program Director, Division of Clinical Innovation
Organization:   NCATS, NIH
 
Name:   Maria Kefalas
Title:   Co-Founder
Organization:   Calliope Joy Foundation
 
Name:   Kristin Smedley
Title:   President
Organization:   Curing Retinal Blindness Foundation
 
Name:   Peter Marks, M.D., Ph.D.
Title:   Director, Center for Biologics Evaluation and Research
Organization:   Food and Drug Administration
 

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:   Ashley Cornett
E-mail:   ashley.cornett@icf.com
Phone:   301-572-0287
 
 
 
 
 
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