Trisomy 18 Info UK


These are lists of all the support groups and online resources we have found for families with children with Trisomy18 in the UK

SOFT UK
UK charity for parents of children and adults with trisomy 18. Has parent contacts for parents with a new diagnosis, some useful online resources and an annual family weekend. Some parents have found them not supportive of more active treatment approaches, though we did receive some encouragment for an active treatment approach from one of their parent supporters

Trisomy 18-13 Support UK 
Website set up by four UK parents of children with rare trisomies. A lot of information on longer term survivors including Saskia who is 25 years old, links to other sources of information, a blog and research.

Emily's Star
A site set up by the parents of Emily Mainwaring who died aged 26 days from complications of T18. Information on T18, some family stories and fundraising for families of children with complex needs around Milton Keynes. Also provides boxes to hospitals, for families with sick babies. Facebook page here

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