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Dr. Elisabeth Dykens Receives Rare Impact Award From National Organization for Rare Disorders

Dr. Elisabeth Dykens was awarded a Rare Impact Award by the National Organization for Rare Disorders. An FPWR grantee, Dykens developed the Dykens Hyperphagia Questionnaire on food-seeking behaviors, which has become the gold standard for measuring outcomes in Prader-Willi syndrome clinical trials.

FPWR congratulates Dr. Elisabeth Dykens, who was awarded last night with a Rare Impact Award by the National Organization for Rare Disorders.

Dr. Dykens may best be known in the Prader-Willi syndrome (PWS) community for developing the Dykens Hyperphagia Questionnaire, an assessment of the food-seeking behaviors common among individuals with Prader-Willi syndrome, which has become the gold standard for measuring outcomes in PWS clinical trials.

dr-elisabeth-dykens-receives-rare-impact-award-from-national-organization-for-rare-disordersDr. Dykens is a leading researcher of mental health issues in Prader-Willi syndrome and has focused her research on issues of obsessive-compulsive behaviors, anxiety and social challenges that people with Prader-Willi syndrome (PWS) often struggle with.

A champion in shining light on issues in individuals with intellectual disability, Dr. Dykens co-chaired FPWR’s Prader-Willi Syndrome Mental Health Research Strategy Workshop in 2015 which contributed to the development of a research strategy to advance the science of mental health is PWS. Mental health and behavioral problems remain a major challenge for individuals with the syndrome and their families and caretakers, with significant impacts on quality of life.

Recently Dr. Dykens has been funded by FPWR for her innovative study to explore using telehealth approaches to teaching social skills and building friendships among teens and young adults with PWS. “Dr. Dykens thinks creatively and intensely about the issues people with PWS struggle with. She is true thought leader in this field and a PWS research rock star,” stated Lauren Schwartz Roth.

"Successful research in any rare disorder includes the voices of affected individuals and their families,” says Elisabeth Dykens. “I have learned so much from people with PWS and their families and look forward to many new collaborations and studies that shine a light on the needs and strengths of people with PWS and their families.”

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Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.