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May. 20, 2019

TOPIC: Advocacy, Featured News, Get Involved

Dr. Debra Regier: 2019 Rare Impact Award Honoree

Posted by Lisa Sencen

Debra Regier, M.D., Ph.D. is the Director of Genetic and Genomic Education at Washington, DC’s Children’s National Medical Center, attending physician in genetics and metabolism and Primary Investigator (PI) for the Rare Disease Clinical Research Scholars Program. A graduate of the University of Utah School of Medicine in 2009 as Primary Investigator, Dr. Regier now leads a program that offers early career rare disease researchers with a curriculum designed to address their specific needs. Currently, her research is focused on assessing outcomes in genetic and genomic education at multiple levels of training.

“When I began my career, I quickly learned that I alone could not see all of the patients or ensure their optimal care. But I could help to ensure that there are rare disease doctors to care for the unique needs of this group of patients,” says Dr. Regier.

Named Clinical Educator of the Year by the National Human Genome Research Institute of NIH in 2018, Dr. Regier has served as a valued mentor to NORD’s Education team, donating her time as a resource. In addition to her role as NORD’s Education Committee Chairperson, Dr. Regier volunteers as the genetics and rare disease expert for the Make-A-Wish Foundation’s national medical advisory council and on the Society for Inborn Errors of Metabolism board of directors. Her work with Make-A-Wish has helped to significantly increase the number of rare disease patients who have been granted wishes.

Reflecting on her work in continuing rare disease education, Dr. Regier says, “Families have impacted me more than I have them. I’ve been honored to ‘live life’ with amazing families who have allowed me to know them, care for them and be a part of their journey.

NORD is honored to present Dr. Debra Regier with a 2019 Rare Impact Award.

 


Join us during NORD’s annual Rare Impact Awards ceremony, presented as part
of the 2019 Living Rare, Living Stronger Patient & Family Forum in Houston, TX.