Privacy Policy

Latest News

2016 Audited Accounts finalised

You can view our 2016 audited Accounts on our "Who Are We" page Find out more...

Thank you!

To the Tea + Toast Theatre Company for donating tonight's performance of "Fizzy Drinks with two Straws" to us for cystinosis research. Find out more...

VHI Women's Mini Marathon 2017

Calling all the ladies out there! Find out more...

First Seedcorn Funding Programme Launched.

In collaboration with the Cystinosis Research Network and the Cystinosis Foundation UK Find out more...

We value and respect all our website users’ privacy and we are committed to safeguarding personal information through compliance with the Data Protection Acts 1988 and 2003 (as amended).

  1. While our website does not make use of cookies, we may collect information regarding what pages are accessed and when, to enable us to understand how our website is used. It is not possible to directly identify individuals from this information.
  2. Personal Information:
    We may also collect and store personal information that you provide when you contact us by email and will use this information only in the context of contacting you regarding your query or comment.
  3. Sensitive Information:
    We do not collect, store or process your financial details (such as credit card and bank account numbers) as this is processed by a bank, if you donate by using a standing order mandate or by Mycharity Limited, if you donate on-line. We cannot take any responsibility for how your information is processed by Mycharity Limited. Please see my for its terms and conditions and its privacy and security statement.
  4. Sharing information:
    We will not share your information with any third parties without your permission.
  5. Updating, correcting or deleting personal information:
    If you would like to find out what personal information we hold for you or if you would like us to update, correct or delete your information in accordance with our obligations under the Data Protection Acts 1988 and 2003, please contact us via email at or write to us at our registered office.
  6. Security
    Since no information transmitted over the Internet is guaranteed to be fully secure, we cannot guarantee the security of any information you may transmit and you do so at your own risk. Once we receive your information we endeavour to ensure that is not misused and to safeguard and protect your privacy.
  7. Our Privacy Policy is subject to change and any such changes will be made on-line without prior notification.
  8. If you have any queries or questions about our Privacy Policy please contact us at