News

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…

Consumption of a high-protein diet shifts muscle cells’ metabolism to use fats rather than carbohydrates as an energy source in children and young adults with Prader-Willi syndrome (PWS), a pilot study in Canada suggests. The findings support the need for more studies to assess the implications of different types…

Specific genetic subtypes and growth hormone use both influence the physical characteristics, such as head shape and eye appearance, of people with Prader-Willi syndrome (PWS), a large study indicates. The study, “Influence of Molecular Classes and Growth Hormone Treatment on Growth and Dysmorphology in Prader‐Willi Syndrome:…

Adults with Prader-Willi syndrome (PWS) have a unique gut bacteria composition, characterized by low levels of probiotic species and a high number of other microbes whose potential health and metabolic implications are still unknown, a study has found. The findings indicate that people with PWS may benefit from probiotic…