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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 or register now at

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:
Videocast:  Event will be videocast LIVE on the Web
Videocast URL:
  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
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of Research Services (ORS) Interpreting Service Requests web page.

Thursday, March 01, 2018   8:30am - 4:00pm Add To Outlook Calendar     Add To iCal Calendar     Add To Entourage Calendar
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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

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

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

Name:   Ashley Cornett
Phone:   301-572-0287
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