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Thank you to everyone who attended this year's Virtual National Convention! Session Recordings are NOW AVAILABLE. Click here to watch.
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Latest News
Breaking Ground: FDA Grants Breakthrough Designation for PWS Drug Development
Big news! Soleno Therapeutics has announced a groundbreaking achievement: diazoxide choline (DCCR) has been granted Breakthrough Therapy Designation by the FDA for Prader-Willi syndrome (PWS). This marks a significant milestone as the FIRST-EVER designation for a drug developed for PWS. The designation underscores the FDA’s recognition of PWS as a serious condition and the potential...
Calling All PWS Community Members: Sign the FDA Petition
Attention everyone in the Prader-Willi syndrome (PWS) community and beyond! We need your support NOW! We are rallying behind a critical petition urging the FDA to take action on DCCR (diazoxide choline) for individuals living with PWS. Soleno Therapeutics’ investigational drug has shown remarkable promise in improving hyperphagia, reducing fat mass, and addressing challenging PWS-associated...
Reflections on The Rare Aware Art Share
“We are all artists, and we all have beauty to share.” ― Laura Jaworski As parents, caregivers, and advocates, we grow accustomed to speaking up for our loved ones with PWS. At every doctor office or IEP meeting, every time they start a dance class or join a team sport, before sleepovers with friends or perhaps...