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2019 Living Rare, Living Stronger NORD Patient & Family Forum

The 2019 Living Rare Forum in Houston brought the rare community together with physicians, medical students, advocates and other supporters for a program of learning, sharing and connection – plus fun! On Saturday, June 22, in conjunction with the Forum, NORD hosted its annual Rare Impact Awards, bringing attendees together to celebrate those making extraordinary contributions to the lives of people living with rare diseases. This year the event was held at Space Center Houston. View honorees.

Click here for a recap of the event and enjoy the photo gallery below.


Thanks to NORD’s Living Rare, Living Stronger Advisory Board

NORD would like to extend our appreciation to the 2019 Living Rare, Living Stronger Advisory Board members who assisted with the program and its varied elements. Their dedication, time and insights help to assure a program that is timely, relevant and meaningful to all members of the rare disease community.

Alice Chen, M.D., National Center for Advancing Translational Sciences, NIH
Xenia Chepa-Lotrea, NIH/NHGRI Undiagnosed Diseases Program
Susan Fernbach, R.N., Baylor College of Medicine
Susan Hedstrom, Foundation for Prader-Willi Research & NORD Board of Directors
Brendan Lee, M.D., Ph.D., Baylor College of Medicine
Pilar Magoulas, M.S., C.G.C., Baylor College of Medicine
Mike Michaelis, OMS Life Foundation
Debra Regier, M.D., Ph.D., Children’s National Rare Disease Institute & Children’s National Health System
Harjot Singh Randhawa, M.D., School of Medicine, American University of Integrative Sciences
Deborah Skolaski, NORD Rare Action Network Texas State Ambassador
Reid Sutton, M.D., Baylor College of Medicine & Texas Children’s Hospital
Monica Weldon, Bridge the Gap – SYNGAP – Education and Research Foundation
Marsha Zimmerman, Acid Maltase Deficiency Association

Key Contacts

General Inquiries: events@rarediseases.org
Sponsorship Inquiries: Alexa Moore at amoore@rarediseases.org
Media Inquiries: Laura Mullen at media@rarediseases.org