News

The Foundation for Prader-Willi Research (FPWR) and Saniona are working together to inform patients and their families of an upcoming Phase 2b trial evaluating Tesomet as a potential treatment of Prader-Willi syndrome (PWS), and to best ensure community involvement. Initiation of this study, which follows positive findings in a…

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…

Transcranial direct current stimulation (tDCS) — a non-invasive brain stimulation technique — altered brainwave patterns in people with Prader-Willi syndrome (PWS) in ways consistent with suppressing impulses in response to food, a pilot study in patients reported. These findings…

The Foundation for Prader-Willi Research (FPWR) and the Prader-Willi Syndrome Association (PWSA) in the U.S. have asked the U.S. Food and Drug Administration (FDA) to reconsider its request for an additional clinical trial of diazoxide choline controlled release (DCCR) tablets in patients with Prader-Willi syndrome (PWS). Last month, the…

Treatment with the probiotic supplement BL-11 was found to significantly increase height in children with Prader-Willi syndrome (PWS) — a new finding that researchers say has “vital implications for early treatment in PWS.” The probiotic supplement also lessened the symptoms of the rare genetic disease among the children…

Sleep apnea — repeat and extended pauses in breathing during sleep — is frequent in obese children, both those with simple obesity and children with Prader-Willi syndrome (PWS) who are not treated with growth hormone, a study suggests. Children with PWS using growth hormone (GH) therapy and less prone…

The COVID-19 pandemic greatly affected the mental health of people with Prader-Willi syndrome (PWS), with worsening of behavioral symptoms such as irritability, temper outbursts, and food‐seeking behaviour, according to results of an online survey conducted by researchers in Germany. These findings are consistent with those of the Foundation…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

People with Prader-Willi syndrome (PWS) and other diseases commonly experience sleep problems, and the problems are rarely addressed effectively by healthcare professionals, according to a white paper published by Harmony Biosciences. Excessive daytime sleepiness, or EDS, is a common symptom experienced by people with rare diseases…

Levels of the hormone irisin in people with Prader-Willi syndrome (PWS) may be related to their genetic background and their intake of vitamin D supplements, a study suggests. The findings support irisin as a biomarker of cognitive function in adults with the disorder. The study, “The…