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Patient Contacts and Information

Angelman Syndrome

ASSERT (Angelman Syndrome Support Education Education and Reseaerch Trust) is the UK based support group, comprising volunteers who direct contact with people with Angelman Syndrome. The majority of the trustees are parents or relatives of children with Angelman Syndrome.

The website will help put much of the information about Angelman Syndrome into the correct context.

Contact Address:  ASSERT, P.O. Box 4962, Nuneaton, CV11 9FD.   Telephone: 0300 999 0102


NAS (The National Austistic Society) is the leading UK charity for people with autism (including Asperger syndrome) and their families, providing information, support and pioneering services, whilst campaigning for a better world for people with autism.

The website provides a great deal of useful information about autism, including Head office Contacts, the Services provided and NAS Regional Team and Branch contacts

National Office Contact Address:  The National Austitic Society, 393 City Road, London EC1V 1NG.   Telephone: 020 7833 2299

Cri-Du-Chat Syndrome

The Cri du Chat Syndrome Support Group aim to provide support to people with Cri du Chat Syndrome by engaging with them and supporting their families, their carers and professionals.

Contact Address:  Cri du Chat Syndrome Support Group, Administration Office, PO Box 3408, Norwich, NR3 3WE.   Telephone: 0845 094 2725

Trisomy 18 (T180 also known as Trisomy E or Edwards Syndrome)

S.O.F.T UK (Support Organisation For Trisomy 13/18 and related disorders) provides booklets about these syndromes, telephone support, links to others and shared experiences through newsletters and annual SOFT Days.

Fragile X Syndrome

The Fragile X Society aims to:

  • Provide support and information for Fragile X families from those who share and understand their concerns and needs
  • Educate, inform and advise the public and professional people about the prevalence and nature of Fragile X in order to raise awareness and understanding of the syndrome and improve the care of all people affected by Fragile X
  • Encourage research into all aspects of the syndrome and publicise the result

Contact Address:  The Fragile X Society, Rood End House, 6 Stortford Road, Great Dunmow, Essex, CM6 1DA.   Telephone: 0137 187 5100

Prader-Willi Syndrome

The only UK organisation dedicated to supporting people with Prader-Willi Syndrome (PWS), their families, carers, and the professionals who work with them.

Contact Address:  PWSA (UK), 125a London Road, Derby, DE1 2QQ.   Telephone: 01332 365676 (office hours: 9:30am-3:30pm Mon-Fri). Answerphone at other times

Turner’s Syndrome

TSSS (The Turner Syndrome Support Society) provides accurate and up to date information on the Turner Syndrome and the many aspects of living with the condition on a daily basis, offering support, advice and information to women and girls with Turner Syndrome and their families.

Contact Address:  The Turners Syndrome Support Society (UK), 13 Simpson Court, 11 South Ave, Clydebank Business Park, Clydebank, Scotland, G81 2NR.

Telephone: 0141 952 8006 or 0300 111 7520 (Helpline)

Down’s Syndrome

DSA (Down’s Syndrome Association) is the only UK organisation which focuses solely on all aspects of living successfully with Down’s syndrome, providing information and support for people with Down’s syndrome, their families and carers, and the professionals who work with them.

Contact Address:  Down’s Sydrome Association, National Office, Langdon Down Centre, 2a Langdon Park, Teddington, TW11 9PS.   Telephone: 0333 1212 3000 Helpline Mon-Fri 10:00am-4:00pm

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