News

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…

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…

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,…

In a “significant subset” of  children with Prader-Willi syndrome (PWS), obstructive sleep apnea worsened after the start of growth hormone therapy, a study of patients in Australia found. “Our results offer support for the current advice to perform follow-up polysomnography [sleep breathing study] in children with Prader-Willi syndrome after…

A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.