News

An exercise intervention program can improve bone health in children with Prader-Willi syndrome (PWS) and potentially lower the risk of osteoporosis later in life, a six-month clinical trial shows. While improvements were reported in only some bones, and not in markers of bone turnover, researchers believe that longer intervention…

The types and levels of bacteria and fungi in the gastrointestinal tract are different in children with Prader-Willi syndrome (PWS) compared with their peers without the syndrome, a study has found. These differences may be linked to the excessive appetite seen in PWS, but this association needs to…

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…

The Foundation for Prader-Willi Research (FPWR) is hosting a video competition to help spread awareness of Prader-Willi syndrome (PWS) and raise funds for research. The FPWR is seeking inspiring stories from the PWS community in the form of short videos, of one-to-five minutes in length. Possible…

A single, wearable motion sensor placed on the lower back successfully detected poor trunk stability and walking symmetry in adults with Prader-Willi syndrome (PWS), a study showed. These findings suggest that this technology may provide a simple, low-cost, and ecologic way to collect and analyze data on PWS patients’…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

The Prader-Willi Syndrome Association and the Foundation for Prader-Willi Research (FPWR) have partnered to launch a survey assessing the use of telemedicine as a way of improving access to care from Prader-Willi syndrome (PWS) specialists. The online survey also seeks to evaluate the stress of caregivers within…

Children with Prader-Willi syndrome (PWS) experience significant reductions in their excessive hunger, anxiety and distress behaviors when treated with the lowest dose of Levo Therapeutics’ LV-101 (intranasal carbetocin) in a Phase 3 clinical trial, the company announced. While the highest dose under investigation (9.6 mg ) did…

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…