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Join NORD this June in Houston, TX for a very special gathering!

The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding – plus fun!

Rare Impact Awards

On Saturday, June 22, 2019, in conjunction with the Living Rare, Living Stronger Forum, NORD will be hosting its annual Rare Impact Awards bringing attendees together to celebrate those who are making extraordinary contributions to the lives of rare disease patients and caregivers. The Rare Impact Awards will take place on the Saturday of the Forum and will be held at Space Center Houston, the Official Visitors Center of NASA Johnson Space Center. View Honorees.


Who Should Attend?
  • Patients and their families (children are welcome!)
  • Caregivers
  • Medical professionals (clinicians, nurses, pharmacists, and more)
  • Students (medical, genetic counseling, and more)
  • Patient organization leaders and patient advocates
  • Researchers and academics
  • Industry

Thanks to NORD Advisory Board

NORD would like to extend our appreciation to the NORD 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