Service description:
PWSA UK is the only charity in the UK working with those with Prader-Willi Syndrome, their families and carers, together with the wide range of professionals from health and social care, education and residential settings, helping them to manage this complex syndrome and cure the challenges of life with PWS.
PWSA UK exists to improve the lives of people with Prada-Willi Syndrome (PWS) and all who are affected or work with them.
PWSA provide
• A telephone, email and Facebook helpline for those in crisis or needing help, information, advice and support
• An information hub, providing everything you need to know about PWS in an accessible, engaging and relevant form,
• Day workshops
• Biannual National Conference.
• The Familynet project, which provides a programme of regional family activities throughout the UK, offering peer support, opportunities to socialise within safe environments and enabling people with PWS to form life-long friendships with peers.
• Training courses for professionals working with people with PWS to equip them with the skills to care for them appropriately
• Video clips for each age group
• AIM accredited awards for carers from supported living and residential care, workshops and conferences.
• Funding for research throughout the world and opportunities to take part in research.