We are delivering a range of services for people with Prader-Will syndrome, their family, friends and those who support them in the community. We will provide events and meetings across the country for our families to come together share experiences, skills and family fun.
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Beneficiaries
People with Prader-Willi syndrome, a rare chromosome disorder, struggle throughout their lives with overwhelming, compulsive, insatiable appetite, poor muscle tone, learning difficulties, incomplete sexual development and emotional and social immaturity. They generally can never live unaided and are on the margins of most communities. The condition is lifelong and there is no cure.
We provide a range of services for those with PWS, their families and health and social care workers including:- A helpline for those often in crisis. Information, guidance, conferences and workshops covering all aspects of the condition. Training for health and social care professionals and carers. Familynet events across the whole of the UK and research to find a cure and alleviate the issues of living with PWS.
