Tel: 0845 094 2725
Group aimsTo provide support and friendship to families and carers through a network of area families throughout the UK and Ireland. They also seek to raise awareness of the syndrome amongst the medical profession, parents, carers and the public.
Group activitiesThey organise an annual family weekend conference which provides the opportunity to meet other families and talk to professionals. They also encourage local area gatherings, and produce two newsletters per annum. Research into the syndrome is also actively encouraged and supported.
Last updated on 21/07/2012
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