The Cystinosis Foundation UK has 4 key aims. These aims lead us to utilising our time and resources as follows:
The Cystinosis Foundation UK aims to collate, digest and disseminate knowledge of Cystinosis, whilst offering assistance where it can to Cystinosis sufferers and their families. To achieve this, effective communication is required. It is our aim to answer all correspondence (in whatever form), as well as keeping in regular contact with Cystinosis sufferers and their families - a hard aim to achieve for a small charity. By contacting us and letting us know who you are and your situation, we can be better placed to help you. You can do this from the website via our Contact Form.
We aim for this website to become a useful knowledge resource in terms of understanding Cystinosis from a medical perspective and in dealing with Cystinosis in our daily lives. Please see our Learning section. Moreover, we aim to regularly update this website with news of what is happening to both the Foundation and its members. Furthermore, a regular free newsletter is available to our members.
In addition, you can keep in touch with others via the Support Forum provided by the Cystinosis Foundation, USA. It is a great way to find out what is going on and meet people affected or connected with Cystinosis in some way.
There are currently thirteen centres specialising in Cystinosis around the United Kingdom. Regular contact is required with each of these clinics, and patients and their families kept informed and supported. Hence, it is the aim of the Cystinosis Foundation UK to visit every clinic twice a year to provide personal support to fellow Cystinotics and their families. Usually this is performed by Jonathan Terry. Again, this will require both time and money.
The Cystinosis Foundation UK has already successfully held several annual conferences, where charity members, Cystinotics and their families have met and shared experiences and knowledge. We hope to continue these conferences and you can find out more about them and other periodic events in our News and Events section.
As well as travelling to the UK centres, we support the bi-annual international Cystinosis Conference that is attended by medical experts, Cystinosis sufferers, their families and friends, and our supporters. And we are in regular contact with other Cystinosis charities around the World.
By attending these events the Foundation is able to report to all Cystinotics and their families as to progress being made internationally and respond with answers to questions that they may have asked.
The Foundation aims to encourage research concerning Cystinosis and where possible support with funding. For more information, see our current achievements and current research campaign.
Originally, the above activities were being paid for using our limited personal resources, although the Foundation now covers most of these the costs. Naturally, we still (and always will) rely greatly on our volunteers to perform tasks on behalf of the Foundation.
If you would like to help us, please see our Help Us section.