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…
The International Prader-Willi Syndrome Organisation (IPWSO) is seeking more responses to its COVID-19 survey evaluating the virus’ potential risks for people with Prader-Willi syndrome (PWS). The survey seeks to answer whether PWS patients might be at higher risk for infection, serious illness, and poor outcomes. Such…
Structural changes in a brain region called the cerebellum are associated with behavioral problems in people with Prader-Willi syndrome (PWS), according to a study in Japan. The findings provided, for the first time, strong evidence supporting the cerebellum as a key contributor to impaired brain connectivity and behavioral issues…
Measuring how electricity moves through the body could help detect low-grade inflammation in adults with Prader-Willi syndrome (PWS) without the need for a blood sample, a new study suggests. This non-invasive method could make it easier to detect increased inflammation — which has been linked to heart disease —…
Get regular updates to your inbox.
