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...
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
COVID-19 infections may be particularly worrisome for our loved ones with PWS, since many of the complications associated with PWS—obesity, diabetes, poor respiratory function—are known risk factors for severe COVID disease. In addition, other neurod...
Topics: Research
In this 1 hour and 19‑minute video, Dr. Aaron Chidekel, a pediatric sleep specialist, and Cindy Szapacs, mom to a teenage son with PWS, discuss excessive daytime sleepiness and other symptoms and treatments for sleep disorders in people with PWS. The...
Topics: Research
In this one hour and 17‑minute video, Dr. Tony Holland, Emeritus Professor of Psychology, Cambridge University, discusses strategies for effective behavior management in PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Con...
Topics: Research
In Prader‑Willi syndrome (PWS), the two main genetic subtypes are PWS by deletion (a small part of dad’s chromosome 15 is missing), and PWS by maternal uniparental disomy (UPD; where two copies of chromosome 15 are present from the mother with no cop...
Topics: Research
