News

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 —…

Children with Prader-Willi syndrome (PWS) whose disease is caused by a deletion in part of chromosome 15 may be more prone to obesity than others with non-deletion disease causes, a study suggests. Different gene expression in the brain likely explains the variability in patients from each group, researchers…

High protein meals induce the secretion of the insulin-stimulating hormone glucagon-like peptide 1 (GLP-1) in children with Prader-Willi syndrome (PWS), suggesting that these kinds of meals may help suppress appetite, a pilot study has found.  The study, “…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

Loss of the paternal copy of Snord116, a gene associated with Prader-Willi syndrome (PWS), causes alterations in sleep and feeding responses in a mouse model of the disease, a study reported. Such changes result from an imbalance among different types of nerve cells in the animals’ hypothalamus, a…

Regular adherence to a careful dietary plan can help children with Prader-Willi syndrome (PWS) maintain a normal amount of visceral adipose tissue, the fatty tissue around abdominal organs, a study reported. The study, “Visceral adipose tissue resides within the reference range in children with Prader-Willi syndrome receiving nutritional intervention…

Growth hormone treatment given for years in childhood and then either restarted or continued as patients reach adult height shows sustained positive effects on body composition among young adults with Prader-Willi syndrome (PWS), including a decrease in fat mass, according to a Dutch study. The study, “…