In this guest blog our Volunteer Evelyn explains the planning process behind her second successful Ceilidh. The Ceilidh was a huge success, and we are… Read More »Dancing for PWS Research

In this guest blog Clare explains the fun they had at her recent charity quiz night. The quiz night was a huge success, and we… Read More »Fun Fundraising!

Thanks to everyone who contributed to our post on social media which asked ‘how people feel about research’. It’s great to hear everyone’s perspective on… Read More »Research – how do we feel about it?

By Marcin Miszkowski 2023 has been a significant year in the development of treatments to help manage some of  the symptoms of Prader-Willi Syndrome. In… Read More »PWS Research Summary 2023

We loved doing our Online Auction last year and managed to raise £1000.  We’re bringing the Auction back this year but with even more items… Read More »2023 Auction! … Coming soon!

Soleno Theraputics the company behind DCCR, recently published positive results from their randomised withdrawal phase of an extended treatment of DCCR. In the study, 77… Read More »FPWR UK Statement on DCCR