Topics: Research
Mental health and behavioral problems are a major challenge for individuals with Prader-Willi syndrome (PWS), with significant impacts on quality of life and independence for both the person with PWS and their family. In 2015, FPWR conducted a two-da...
This guest blog was contributed by Sara Cotter, CEO, Levo Therapeutics. When developing new medicines to treat PWS, companies need to demonstrate meaningful improvements in PWS symptoms. For growth hormone, this was relatively straightforward because...
Topics: Research
The results of a Phase 2 clinical trial evaluating carbetocin in PWS have just been published in the journal JCI Insight. The findings of the paper, "Intranasal Carbetocin Reduces Hyperphagia In Individuals With Prader-Willi Syndrome," support the ad...
Topics: Research
On May 15, PWSA-USA and FPWR jointly presented the webinar How Patients Can Partner to Speed Treatments for PWS. The webinar provided important information about PWS clinical trials including: what to expect when participating in a trial, what questi...
Topics: Research
FPWR congratulates Dr. Elisabeth Dykens, who was awarded last night with a Rare Impact Award by the National Organization for Rare Disorders. Dr. Dykens may best be known in the Prader-Willi syndrome (PWS) community for developing the Dykens Hyperpha...
Topics: Research
Soleno has announced the opening of their first clinical trial site for a Phase 3 study of DCCR to measure the drug's efficacy for treating hyperphagia in PWS. That site is Seattle Children’s Hospital.
Topics: Research
The Foundation for Prader-Willi Research announces our first round of Research Awards in 2018 totaling $615,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ha...
Topics: Research
Anxiety is a common challenge for our loved ones with PWS. Recently, we reviewed responses in the Global PWS Registry related to anxiety. According to registry respondents, anxiety is an issue for 48% of individual with PWS ages 10 and up.
Topics: Research
It is an exciting time in PWS research, with multiple new clinical trials on the horizon this spring and through the end of 2018! There is already buzz throughout the community about upcoming studies, providing a wonderful opportunity for an open dia...
Topics: Research