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Alstrom Syndrome UK
49 Southfield AvenuePaignton
Devon
TQ3 1LH
Tel: 01803 524238
Fax: 01803 524238
Web: www.alstrom.org.uk
Best time to telephone: any time (answerphone operates)
Alström Syndrome (AS) is a hereditary and very rare disorder which begins to take effect during early childhood. Alstrom Syndrome UK was set up by two parents of affected children. The group combines its aim to reach all affected families in the UK with its desire for high quality medical advice. Features of the group are as follows.
- Team of medical advisors, including an Opthalmologist, Cardiologist, Geneticists and an RNIB teacher.
- Family conferences held regularly.
- Multi-disciplinary clinic held regularly.
- Affiliated to the International Society of Alstrom Families.
- Close links with Jackson Laboratory, Maine, USA who are pioneering genetic research into Alström Syndrome.
Contact the above address or visit the website for further information.
From April 2006 NSCAG Funding has been received from Birmingham Children's Hospital and Torbay Hospital for specialised multi-disciplinary clinics - for up to date information visit the above website.
Checked: May 2006
Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.
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