Policy Statement

Cystinosis Foundation UK is committed to protecting the privacy and security of your personal information. This Privacy Policy gives you detailed information on when and why we collect your personal information, how we use it and how we keep it secure.


The General Data Protection Regulation (GDPR) is a piece of EU legislation that came into force on 25th May 2018. The core intent of GDPR is to give individuals more control over the use of their personal data and how data is stored. This legislation along with the Data Protection Act 2018 (DPA), gives more rights to you as an individual and more obligations to organisations holding your personal data.

One of the rights is a right to be informed, which means we have to give you more information than previously about the way in which we use, share and store your personal information.

Data Controller

Cystinosis Foundation UK is the Data Controller, please see below our full contact details:

Cystinosis Foundation UK
Unit 81304
PO Box 15113
B2 2NJ

Registered Charity No: 1074885

How we collect your personal information

We collect your information when you decide to interact with us, sign up to our mailing list, make a donation, undertake fundraising efforts and receive support services and products. We also collect information about your device to look at how our audience use our website, so that we can offer the best possible experience. Information collected includes your IP address, geographical location, browser type and version, operating system, referral source, length of visit, page views and website navigation paths.

Purpose and lawful reasons for processing your data

For all goods and services donated by Cystinosis Foundation UK to patients or carers, we will process your data to ensure the correct delivery of those goods and services. The lawful reason for processing data in these cases is contractual and will include:

  • Products or services provided to you by Cystinosis Foundation UK
  • Received donations

We may process your data for emotional support requests and general enquiries. We will only process your data in this regard and contact you if we have obtained your consent to do so. The lawful reason for processing data in this case is consent and will include:

  • Emotional support
  • General enquires – such as donating and fundraising information
  • Information and advice requests

We may contact you from time to time regarding information you may be interested in from the Cystinosis Foundation UK or related organisations. We will only process your personal data in this regard and contact you if we have obtained your consent to do so. The lawful reason for processing data in this case is consent and will include:

  • Health, research and medication news
  • Cystinosis Foundation UK news
  • Newsletters
  • Surveys

We may process data which falls within the special categories of data. The below list details the data which are processed that falls in that category:

  • Health information – for any product or services requests. This information will only be used with your consent and to ensure we are able to deliver any special requirements you may have. The lawful reasons for processing these data are consent and explicit consent as given by you, the data subject.

Data Sharing

Cystinosis Foundation UK will never share, sell or trade your personal information to any third parties for marketing purposes.

We may share your data with representatives or volunteers of Cystinosis Foundation UK for the purposes of providing a product or service request approval. The data shared with these individuals is limited only to individuals that meet our standards for data security. Regular training and auditing is conducted to ensure that these aims are met.

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 Justgiving to enable them to process your donation. Please see Just Giving ( for a list of their terms and conditions.

If you have applied to Cystinosis Foundation UK for funding, your data will be shared with selected suppliers that provide such product or service, however, your data will only be shared with your explicit consent.

Types of information we collect

We only collect the information that is necessary to carry out our business and provide a particular service that you have requested, and to keep you informed. This includes:

  • Demographic information (Name, address, contact details, e-mail address)
  • Health information
  • Equipment, merchandise and service requests
  • Funding decisions
  • Fundraising activity
  • Donation activity
  • Support needs
  • Communication records

How your information is stored

Your information either will be stored on our website, in a restricted secure server environment or on cloud-based software that we have verified as suitable and which meets our security requirements. Only individuals that need to will be allowed to access your data and this access is limited to the requirements of the individual’s task. We ensure that all individuals, volunteers and staff members of any third party have been trained to understand their requirements in keeping your data safe. Any sensitive hard copy paper records which may be sent to the organisation, such as medical diagnosis, are transferred into electronic format and is securely deleted or returned once acknowledged.

How long is your information kept

We will only keep your data for as long as it is necessary, the majority of information will be retained for 7 years to coincide with financial requirements.  For areas that you have withdrawn your consent or asked for your data to be removed, it will be destroyed as soon as possible within 1 month. If we decide not to destroy your data, we will inform you as to why we have made this decision.

Your choices

You should find it easy to access and amend the personal information that we hold on you. If you wish to update information or communication preferences please contact us by emailing

Your rights

You have the following rights as an individual:

  • The right to be informed
  • The right of access
  • The right to rectification
  • The right to erasure
  • The right to restrict processing
  • The right to data portability
  • The right to object
  • Rights in relation to automated decision making and profiling.

If you have any queries or concerns regarding the use of your data and the above rights, please contact us by email to

The supervisory authority is the ICO and comments and concerns can be raised with them Further information on data protection regulations and laws can be found:   

Comments are closed.

Novartis Gene Therapy Update We have received this message from Novartis regarding their gene therapy program for [...] Read more...
CNE International Conference 2024 Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Summer 2023 Newsletter The Summer 2023 edition of our email newsletter is available to view at the link below. CFUK [...] Read more...
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.