Topics: Research
A new study looking at the long-term consequences of early hip dysplasia does not support an aggressive approach to treating hip dysplasia in babies with PWS. The paper provides useful guidance and suggestions for physicians who are evaluating babies...
During a time when much feels uncertain, one constant that we can count on is the never ending drive and tenacity of our PWS families and their desire to improve the future of Prader-Willi syndrome through supporting research.
Topics: News
Parents may want to download and keep a copy of this review on scoliosis in PWS. The paper comes from Dr. Harold van Bosse, an orthopedic surgeon at Shriner’s Hospital with extensive experience in caring for kids with PWS and scoliosis, and Dr. Merli...
Topics: Research
Results have now been published on a study looking at eye tracking and hyperphagia in younger children with PWS (ages 3-11 years old). The study found that children with PWS who had higher hyperphagia questionnaire scores and more advanced nutritiona...
Topics: Research
Two recent papers address an area that has received very limited attention to date, aging in PWS. Both papers point to differences in aging in young adults with PWS compared to typical individuals and suggest that this is an area that is in need of f...
Topics: Research
When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin, and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS. Da...
Topics: Research
Soleno Therapeutics has announced top-line results from the company’s phase 3 trial, DESTINY PWS (C601), evaluating once-daily diazoxide choline controlled release (DCCR) tablets for patients with Prader-Willi syndrome (PWS). The results of the study...
Topics: Research
A special contribution by guest blogger Alice Shapley Our beautiful and amazing 7‑year‑old daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the rol...
Topics: Stories of Hope
The Foundation for Prader-Willi Research announces our first round of Research Awards in 2020 totaling $912,251. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ha...
Topics: Research