News

Saniona Video Series Highlights Impact of PWS and Hypothalamic Obesity

A new video series from Saniona is highlighting the impact, on patients and caregivers, of Prader-Willi syndrome (PWS) and an associated condition called hypothalamic obesity. Called “Saniona’s Community Voices,” the series features people living with rare diseases, including PWS, along with their caregivers, and healthcare professionals. The…

From Bingo to Fitness and Mixology, Activities Mark Awareness Month

From joining a mixology course to participating in fundraiser bingo, supporters globally are set to mark Prader-Willi Syndrome Awareness Month, observed each May. Awareness and education are crucial to heightening the recognition, diagnosis, understanding, and management of Prader-Willi syndrome (PWS), a genetic disorder characterized by weak muscles, slow growth,…

Urinary Dysfunction Common Among Younger Patients

Bladder problems leading to urinary incontinence and other manifestations are common among children, adolescents and young adults with Prader-Willi syndrome (PWS), a study shows. The study, “High prevalence of lower urinary tract dysfunction in patients with Prader–Willi syndrome,” was published in the journal Neurourology and Urodynamics.

Excessive Eating Affects Caregiver Burden in PWS

The excessive eating experienced by people with Prader-Willi syndrome (PWS) intimately affects the burden felt by their caregivers, according to a recent study. While this comes as no surprise to caregivers, the finding provides some of the first direct evidence of this relationship, which can inform future studies. The…

Advocacy Groups Oppose Additional Trial for DCCR

The Foundation for Prader-Willi Research (FPWR) and the Prader-Willi Syndrome Association (PWSA) in the U.S. have asked the U.S. Food and Drug Administration (FDA) to reconsider its request for an additional clinical trial of diazoxide choline controlled release (DCCR) tablets in patients with Prader-Willi syndrome (PWS). Last month, the…