The Hyperphagia Questionnaire for Clinical Trials (HQ-CT) is typically completed by caregivers for individuals with PWS who are enrolled in clinical trials. The questionnaire is designed to evaluate changes inhyperphagia during the course of the tria...
In this one hour and 25-minute video, Dr. Diane Stafford, Endocrinologist at Stanford University School of Medicine, provides an overview of care for people with PWS over age 10 including medical needs, currently available medications, supplements, l...
Topics: Parents, Adults, Children 12-18
You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO. This year's conference has something for every parent traveling this PWS journey. Attend interactive workshops designed to provide practical tools an...
Topics: Parents, Adults, Children 0-3, Children 3-6
A special contribution by guest blogger Andrew Comer The 2022 FPWR Family Conference in Chicago was an important turning point for our family. Our daughter Lucy had been born only six months prior, and diagnosed with PWS a month after that. My wife S...
Topics: Parents
You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO.
Topics: Parents, Adults, Children 0-3, Advocacy
This September 29 - October 1, parents, caregivers and medical professionals from across the country will once again be coming together to connect, learn, and be inspired at the Foundation for Prader-Willi Research’s Annual Research Symposium and Fam...
A special contribution by guest blogger Will Greene When our son Ari was diagnosed with Prader-Willi syndrome in January 2022, FPWR emerged as a beacon of hope in our caregiver journey. That’s why I’m making the long trip from Singapore to Chicago to...
Topics: Stories of Hope, Parents
