Where are we with respect to new treatments for PWS? What are our next steps and how can the patient community help ensure that treatments for PWS are made available as soon as possible? In this webinar, our panelists discuss:
FPWR and PWSA|USA have submitted a petition letter to the FDA requesting them to apply regulatory flexibility and to review a New Drug Application for DCCR (diazoxide choline extended-release).
Topics: News
In this 90‑minute workshop, Drs. Janice Forster and Stuart Libman provide Acceptance and Commitment Training (ACT) to help PWS parents build skills for living with greater awareness, openness, and engagement in valued life pursuits. The session inclu...
Topics: Research
There has never been a more critical time to keep research pushing forward. We need your help to raise the funds needed to advance PWS research. Whether you have never asked for donations or you are a veteran fundraiser, here are 4 fun and creative i...
When it comes to hormone imbalances in Prader-Willi syndrome (PWS), growth hormone deficiency and growth hormone therapy are at the forefront of the conversation. However, the levels of several other hormones are also more frequently different in PWS...
Topics: Research
Harmony Biosciences has published a white paper sharing outcomes from a Summit on Sleep Disruption the company hosted in December 2020. For the first time, this summit convened a diverse group of people living with rare diseases, caregivers and leade...
In this 75-minute presentation, experts Elizabeth Roof, Anastasia Dimitropoulos, Louise Gallagher, and Lauren Schwartz-Roth discuss what we've learned about social skills and Prader-Willi syndrome. In particular, they discuss what we can do to addres...
Topics: Research
Neuren Pharmaceuticals has added Prader-Willi syndrome to their development pipeline for compound NNZ-2591 following a successful study in a pre-clinical model. The study showed compelling benefits for treating key symptoms of PWS.
Topics: Research
Nikol Maher, mom to Jack, turned her fear into determination using the family's love of sports. Jack was diagnosed with PWS when he was 3 weeks old. The news devastated our family and we could not begin to explain how fearful we were for our sweet bo...
Topics: Stories of Hope
