The Cystinosis Foundation UK is committed to safeguarding your privacy online. Please read the following policy to understand how your personal information will be treated:

What Information does the Cystinosis Foundation UK collect and how is it used?

The Cystinosis Foundation UK collects information regarding what pages are accessed and when to enable us to understand how our website is used (e.g. what content is popular). It is not possible to directly identify individuals from this information. Nor does this site make use of cookies.

We may also collect information volunteered by you via our contact form and will use this information only in the context of contacting you regarding your query and the Cystinosis Foundation UK.

Should you choose to use our on-line donation facility, your information is only used in the context of this transaction and to reclaim Gift Aid, should this be applicable. Your financial details (such as credit card numbers) are not held by the Cystinosis Foundation UK and are processed only by Just Giving , who provide our on-line donation facilities. Please see Just Giving ( for a list of their terms and conditions.

With whom does the Cystinosis Foundation UK share my information?

The Cystinosis Foundation UK does not share your information with any third parties without your permission. The only exception is through use of our on-line donation facilities where your information is passed to PayPal to enable them to process your donation. Please see Just Giving ( for a list of their terms and conditions.

How do I update, correct or delete my personally identifiable information?

Please contact us via the website contact form to update, correct or delete your information, or write to us at the address advertised on this website.

What security precautions are in place to protect the loss or misuse or alteration of my information?

Unfortunately, no data transmitted over the Internet is guaranteed to be 100% secure. Therefore, the Cystinosis Foundation UK does not warrant the security of any information you may transmit and you do so at your own risk. Once we receive a transmission we do our best to ensure it is not lost, misused or altered.

The on-line donation facility is provided by JustGiving, who offer the service over a secured, encrypted protocol. Please see Just Giving ( for their security precautions.

Users under 18.

If you are under 18 and using this website or supporting the Cystinosis Foundation UK in any form, please let an adult know.

Data Protection

UK law requires the Cystinosis Foundation UK to be registered with the Information Commissioner’s Office, that the data we hold on individuals and our use of this data is both legal and responsible, and that those who have access to it are vetted accordingly. We are registered with the Information Commissioner’s Office, registration number Z9880997, and take our responsibility seriously. For more information see The Information Commisioner’s website.

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All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.