We're excited to announce that select sessions from our recent PWS Research Symposium and Family Conference are now available to watch! This year’s event brought together leading experts, researchers, and families from around the world to explore the...
As the COVID-19 pandemic continues to evolve, researchers are working hard to understand how the virus affects individuals with Prader-Willi syndrome (PWS). A recent study by FPWR Grant Recipient Dr. James Luccarelli and colleagues from the Massachus...
Topics: Research
Meet Team FPWR, a powerhouse group of eleven incredible individuals lacing up their sneakers to conquer the New York City Marathon on November 3, 2024! Each runner brings a unique story and a shared passion for supporting Prader-Willi syndrome resear...
Topics: Stories of Hope, PWS People
In a recent webinar, Acadia Pharmaceuticals shared details of their COMPASS-PWS Clinical trial which is currently enrolling volunteers with PWS between the ages of 5 and 30 who experience hyperphagia. This phase 3 clinical trial aims to evaluate the ...
The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics' DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency'...
Topics: Research
Soleno Therapeutics announced today that the U.S. Food and Drug Administration (FDA) has accepted their New Drug Application (NDA) and granted priority review for DCCR (Diazoxide Choline Controlled-Release), a treatment for patients with Prader-Willi...
70% of cases of Prader-Willi syndrome are associated with a “deletion” of 5,000–6,000 missing base pairs (bp) of DNA on the paternally inherited copy of chromosome 15. What are the biological consequences of the larger 6,000-bp deletion (typically ca...
Topics: Genetics and Imprinting, Research
A special contribution by guest blogger Lisa Matesevac. Welcome to the ATL! We are thrilled that our city will host the annual Foundation for Prader-Willi Research Symposium and Family Conference in September 2024! Together with my family and the Geo...
Topics: Parents
On Friday, August 2nd, the PWS Advocacy Coalition submitted a petition to the U.S. Food and Drug Administration (FDA), requesting the filing and priority review of the New Drug Application (NDA) for Soleno Therapeutics’ drug, DCRR. The petition signe...
