News

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…

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…

Virtual Turkey Trot Seeks to Harvest Hope and Raise Awareness

The Foundation for Prader-Willi Research (FPWR) is presenting Harvesting Hope for PWS, a virtual “turkey trot” distance challenge to raise awareness about Prader-Willi syndrome (PWS), support research, and promote health and exercise. The nonprofit organization is encouraging supporters of all ages to log up to 100 miles walking, jogging,…