The Foundation for Prader-Willi Research has received the Abbey S. Meyers Leadership Award as part of the 2026 NORD Rare Impact Awards for its Global PWS Registry research. We’re honored by NORD’s recognition and deeply grateful to the families who make the Global PWS Registry possible.
Over the past decade, families have shared their experiences through the Global PWS Registry, helping researchers build a clearer picture of PWS across ages and stages. Their contributions have led to insights about sleep, mental health, growth hormone access, and other aspects of life with PWS. Explore 10 things we’ve learned from the Global PWS Registry.
Through the PATH for PWS study, Registry contributors also contributed real-world information about hyperphagia and its impact on daily life. Those insights helped support the FDA’s review of VYKAT XR, the first approved treatment for hyperphagia in PWS.
Registry data continues to help researchers study other challenges faced by people with PWS and identify questions that still need answers.
“I could not be more proud of our organization and community. I’m continually inspired by the PWS families, researchers and clinicians who have given so generously of their time and talents to help FPWR advance its mission.”
— Theresa Strong, FPWR Director of Research Programs
This recognition belongs to every person with PWS and every family who has taken the time to share their experience. It also speaks to what our community can accomplish together: turning the realities of daily life into evidence that researchers and decision-makers can use.
Thank you to the National Organization for Rare Disorders for this honor and for creating the IAMRARE platform that supports the Global PWS Registry.
Thanks also, of course, to our Registry participants. Your voices shape the future of PWS research.
Learn more about the Global PWS Registry and participate at pwsregistry.org.