We are really proud of our members and will jump at every chance to shout about them and their achievements! This is a dedicated place to showcase our members and to shine the spotlight on their projects. Keep scrolling to hear from our new member the PWSA UK.
How it works
PWSA UK is a small charity providing lifelong support to all those affected by Prader-Willi syndrome (PWS). PWS is a rare genetic condition causing an overwhelming and uncontrollable drive to eat that can be life-limiting, as well as learning and physical disabilities. We provide a dedicated helpline a comprehensive information hub, a regional network of peer support groups with a varied programme of community events, training for professionals working with those with PWS, and support for vital research. Our aim is to help our amazing community overcome the challenges and live life to the full with PWS.
What has been achieved?
PWSA UK makes a difference by:
- Improving understanding about PWS.
- Reducing loneliness and isolation.
- Increasing knowledge of rights and entitlements to financial support and helping people to access better support from external organisations.
- Increasing mental wellbeing (adults surveyed had higher mental wellbeing than the general population of people with learning disabilities).
Next steps
- More age-appropriate support and social activities for adults with PWS, including people over 40, and their families.
- Expanding our information hub, showcasing success stories in the community and increasing communications about research that is in progress.
- Improving our events and providing financial support so that families that need it can attend.
- Increasing our geographical reach.
- Training more professionals and partnering strategically with external services.
More information
Website: www.pwsa.co.uk
Twitter: @PWSAUK
Facebook: @PWSAUK