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Apr. 25, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members

Elisabeth Dykens, Ph.D.: 2018 Rare Impact Award Honoree

Posted by Christina Jensen
Elisabeth Dykens, 2018 Rare Impact Award Honoree

Elisabeth Dykens, 2018 Rare Impact Award Honoree

Elisabeth Dykens, Ph.D., a clinical psychologist and researcher studying rare genetic syndromes, has long been a leader in the field of intellectual and developmental disabilities. Since she began her research in the late 1980s, she has come to be regarded nationally and internationally as an authority on behavioral characteristics.

Elisabeth has focused her career on the behavioral studies of Prader-Willi Syndrome (PWS) and Williams Syndrome and was the first researcher to describe cognitive profiles and compulsivity in PWS patients. In addition, her research on both PWS and Williams has led to the development of numerous clinical trials and a library of over 150 peer-reviewed publications. She has received various honors including the Association of University Centers on Disabilities Outstanding Achievement Award in 2011.

As important as her scientific achievements are for the advancement of rare disease research, she has also had an invaluable role in improving the lives of patients and families outside of research by serving as a friend to the community.

“The real heroes are the families and individuals themselves. It has been nothing but a pleasure to share their struggles and strengths with them. I feel honored to do that.”

As the Director of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, one of her first research projects with the team was establishing the Academy of Country Music (ACM) Lifting Lives Music Camp for People with Williams Syndrome, a week-long residential camp studying the connection between Williams Syndrome patients and their love for music. Now in its twelfth year, while serving to study Williams Syndrome, the camp also provides music enrichment, education, and opportunities for independence and flexibility advancements for campers. In the years since the camp started, 40 peer-reviewed articles have been published and campers have learned valuable life skills that have led to employment opportunities. For Elisabeth, this is especially gratifying, and the camp has become her passion.

Elisabeth Dykens, 2018 Rare Impact Award Honoree

Elisabeth Dykens, 2018 Rare Impact Award Honoree

Outside of her work with the research team, she has served as a Board Member on the Special Olympics and on the Scientific Advisory Board of the Prader-Willi Syndrome Association.
As more trials come to fruition, Elisabeth has high hopes for the future and looks forward to sharing more resources with the rare disease community to fill the gap while cures for genetic syndromes are still being sought.

NORD is proud to present Elisabeth Dykens with a 2018 Rare Impact Award.


Join us during NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards on May 17!
Learn More.