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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
PWS Parenting Hacks
We reached out to our PWS community of parents and caregivers to ask, “What is your PWS Parenting Hack?” Our goal was to gather tips and tools that help parents and caregivers navigate the challenges of PWS. What may seem like a simple tip from one parent could be life changing for another. So, please...
Neuren Pharmaceuticals Opens Second Trial Site for Phase II PWS Study
Neuren Pharmaceuticals is pleased to announce their second site participating in their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is now open for screening! Important information regarding this exciting milestone: Two sites are now open to enrollment! Rare Disease Research (RDR), located in Atlanta, GA, and Uncommon Cures, located in Chevy Chase, MD (8 miles outside...
PWS Mom Advocates for Wisconsin Legislation to Lower Treatment, Therapy Costs for Individuals Living with Rare Diseases
Contributed by Katie Moureau On Wednesday, January 10, 2024, Katie Moureau, mom to a 9-year-old boy with PWS was able advocate in support of Assembly Bill 687 – Authorization of Value-Based Arrangements for Medicaid Programs for all rare diseases. She was one of 2 advocates testify. As we know there are NO FDA approved treatments...