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Cystinosis Foundation United Kingdom
174 Corwen Road
Tilehurst
Reading
RG30 4TA
Tel: 0118 9414 232
Web: www.cystinosis.org.uk
The aims and objectives of the Cystinosis Foundation United Kingdom are:
- Patient support - to provide support to anyone diagnosed with cystinosis, as well as their families. Parents and the adult patients will be offered information on an advisory level about the condition and about referrals. They will also receive a regular newsletter and be invited to conferences organised by the foundation and it's supporting organisations.
- Education - to highlight the disorder to members, the medical profession (particularly at GP level) and the community as a whole through receptions, the regular medical conferences already organised, and by distribution of literature so that children with the disorder can be identified more quickly.
- Research support - to assist in the promotion of research into treatment for the curing of cystinosis.
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