News

Supervised exercise can improve physical fitness and increase lean body mass in people with Prader-Willi syndrome (PWS), and boost bone health in pediatric patients, according to a review study. These benefits occur even in the absence of weight and fat loss in these patients, who are less active than…

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…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

The Foundation for Prader-Willi Research (FPWR) announced its support for ARD-101, an investigational, gut-targeting Prader-Willi syndrome (PWS) therapy, by investing in Aardvark Therapeutics, the treatment’s developer. “FPWR is committed to advancing the development of innovative treatments through multiple channels,” John Walter, CEO of FPWR, said in a…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

People with Prader-Willi syndrome (PWS) are aware of the disease, but not of its social consequences, a small single-site study has found. These findings may have important clinical implications for care as “patients believe they are capable of independent living when they are actually not,” the researchers wrote. The…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

In adults with Prader-Willi syndrome (PWS), use of growth hormone (GH) treatment may improve the quality of sleep with no significant negative effects on breathing, such as obstructive sleep apnea, a Scandinavian study suggested. The study, “Effects of Growth Hormone treatment on sleep-related parameters in adults with Prader-Willi…

The goal of the Foundation for Prader-Willi Research (FPWR) is to fund and support studies that will help “to eliminate the challenges” faced by people with the rare genetic disease, its leadership said in a recent webinar highlighting the FPWR’s ongoing studies and other projects. To that end, Susan…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…