News

Case Report Suggests Signs of PWS During Pregnancy

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…

Study: Adults With PWS Have Suicidal Thoughts More Often

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…

Nonprofits Working to Add PWS to Newborn Screening in North Carolina

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…

Global Genes, Diversity Coalition Team Up to Advance Health Equity

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…