News

A multidisciplinary approach that included weight reduction through calorie restriction and diuretics, ventilation support, skin care, and rehabilitation successfully managed life-threatening right heart failure due to severe obesity in a young man with Prader-Willi syndrome (PWS). These findings from a case study highlight not only the effectiveness of such a…

During pregnancy, Prader-Willi syndrome (PWS) may manifest as an excess of fluid around the developing fetus coupled with restricted fetal growth and decreased fetal movement, a new report indicates. These signs should alert clinicians to consider testing for the possibility of a PWS diagnosis, the researchers wrote. The…

Suicidal thoughts are more frequent in adults with Prader-Willi syndrome (PWS) than in the general population and typically begin in mid-teenage years, according to a study using the Global PWS Registry. In contrast, youths with PWS appear to have fewer suicidal thoughts than the general population of children and…

There is no substantial evidence supporting the efficacy of LV-101 (intranasal carbetocin), a nasal spray designed to reduce the insatiable hunger, called hyperphagia, that’s a hallmark of Prader-Willi syndrome (PWS), according to a 12-1 vote by a U.S. Food and Drug Administration (FDA) advisory committee. The overwhelmingly negative vote followed…

Four organizations have joined efforts to fund the addition of Prader-Willi syndrome, Angelman syndrome, and Dup15q syndrome to the Early Check newborn screening panel in North Carolina. The initiative is led by the Foundation for Prader-Willi Research (FPWR), Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics (FAST), and…

In return for a reduction in the abnormal hunger and excessive eating, called hyperphagia, that characterizes Prader-Willi syndrome (PWS), caregivers of patients with the rare genetic disease — even many who did not identify as risk-takers — are willing to accept medications with a potential for side effects,…

The Prader-Willi Syndrome Association (PWSA) USA announced that this year’s Angel Drive donation campaign — supporting the nonprofit in assisting those with this complex genetic disorder, and in advocating and funding research — will start on Nov. 1. With chapters in most U.S. states, PWSA USA is the only national…

Prader–Willi syndrome (PWS) is associated with a specific molecular signature — a set of genes that can be used as markers for a certain trait — in the brain that is linked to episodes of psychosis, or a loss of contact with reality, a mouse study found. According to…

Saniona announced that information requested by the U.S. Food and Drug Administration (FDA) to allow a new trial of Tesomet, a potential treatment for Prader-Willi syndrome (PWS), in a capsule form has been given to the agency. The company expects these details of the capsule’s manufacturing —…

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…