Topics: Research
A special contribution by guest blogger Lisa Matesevac This summer, my family made our annual 15-hour trek to visit family in Buffalo, NY. This was a much-needed reprieve for our family as Evan, our teenage son with PWS, was recovering from recent s...
Temper outbursts are a common challenge for many people with Prader-Willi syndrome. The published study "The characteristics of temper outbursts in Prader-Willi syndrome" sheds light on temper outbursts in PWS. Drs. Rice, Einfeld and Woodcock, all ve...
Topics: Research
In July 2022, FPWR’s Executive Director Susan Hedstrom, Director of Research Programs Theresa Strong, and Lauren Schwartz, FPWR’s leader of the Mental Health & Behavior Research Programs, attended the International Prader-Willi Syndrome Organisat...
Topics: Research
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...
FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely. Some trials are testing new drugs while others are intervention ...
Topics: Research
People with PWS have a higher risk for developing blood clots than the general population, but the risk is poorly understood. A recent study explored whether testing for a protein called D-dimer could be an informative tool for predicting blood clot ...
Topics: Research
A tremendous amount of work has been done by The PWS Clinical Trials Consortium to understand and document the views of Prader-Willi syndrome families. Now, a new study validates what PWS caregivers have reported, by sharing first-person perspectives...
Topics: Research
Two new papers from an international group of PWS expert physicians outline the clinical experience and provide recommendations for sex hormone replacement therapy in adult males and females with PWS.
Topics: Research
A newly published paper examines sleep disorders, seizures, and psychiatric concerns in PWS. Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, the study provides a great deal of valuable data and new insight...
Topics: Research