Patricia Inácio, PhD, science writer —

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…

The Prader-Willi Syndrome Association (PWSA) USA has earned a Patients at the Heart award from Harmony Biosciences. Announced Wednesday on World Narcolepsy Day, which takes place every year on Sept. 22, the award was given to the project “Disordered Sleep: A Deep Dive for Parents and Practitioners.”…

A new research project in Australia is investigating what underlies sleep-disordered breathing — an umbrella term for abnormal breathing patterns during sleep — often seen in children and adults with Prader-Willi syndrome (PWS). The goal, according to the researchers, is to better understand “breathing control stability” in children with…

The first healthy volunteers were dosed in a Phase 1 clinical trial evaluating Inversago Pharma‘s INV-102, a potential therapy for Prader-Willi syndrome (PWS) and other metabolic disorders. According to a company press release, the trial, underway in Canada, started dosing following a “No Objection Letter” from Health Canada.

The mean total annual costs of raising a child with Prader-Willi Syndrome (PWS) — an estimate that takes into account services use, impact on parental income, and care arrangements — is more than AU$57,500 (about $42,500) per child, according to an Australian study of four rare disorders that cause…

The Foundation for Prader-Willi Research (FPWR) has partnered with My Gene Counsel to safely and responsibly return genetic test results to Prader-Willi syndrome (PWS) patients who have joined the first PWS Genome Project. Launched in May, the PWS genome sequencing project seeks to unveil how variations in a…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Lockdown during the COVID‐19 pandemic led to weight reduction among half of adults with Prader-Willy syndrome (PWS) in a French study, data show. Weight loss typically was seen in patients with higher physical activity and better eating habits. Moreover, these findings likely reflect changes in lifestyle behaviors and…

The Foundation for Prader-Willi Research (FPWR) is launching the first Prader-Willi syndrome (PWS) Genome Project, it announced. This project aims to unveil how variations in patients’ DNA influence the range and severity of PWS symptoms, and impacts response to different treatments. Initially, it is looking to enroll about…

In interviews, most caregivers of people with Prader-Willi syndrome (PWS) reported an easing in patients’ behavioral symptoms after 13 or more weeks of treatment with diazoxide choline controlled release (DCCR) tablets in a Phase 3 trial or its ongoing extension study. Interviews were given to 48 caregivers of enrolled patients…