Cystinosis.org.uk
Title
Cystinosis Foundation UK
Description
Approximately 150 people in the UK and Eire have now been diagnosed with Cystinosis and approximately 30% of these are now adults. This number is gradually increasing due to greater knowledge among medical practitioners in diagnosing the condition in children. I, myself, am the oldest Cystinotic in the UK, born in December 1962. In fact, the number of adults with this condition is growing due to successful research into the condition and the development of new drugs to stabilise the cystine levels in the bodies of Cystinotics.
I have worked full-time most of my working life, but have now taken on the role of Founder of this organisation on a full-time basis. I wish to devote my life to my fellow Cystinosis patients and their families, who require tremendous support. The Cystinosis Foundation UK now has a board of five Trustees and in April 1999 achieved charity status.
1. Patient Support
To provide support to anyone diagnosed with Cystinosis, as well as the families and relatives. Parents and the adult patients will be offered information about the disorder and about referrals. They will also receive a regular newsletter and be invited to conferences organised by the Foundation and its supporting organisations.
Languages
English
