Privacy Policy


This privacy policy sets out how Reverse Rett uses and protects any information that you give us when you use this website.

Reverse Rett is committed to ensuring that your privacy is protected, and abides by the Data Protection Act 1998, and by upcoming GDPR regulations effective 25th May 2018. Should we ask you to provide certain information by which you can be identified when using this website, then you can be assured that it will only be used in accordance with this privacy statement.

Reverse Rett may change this policy from time to time by updating this page. You should check this page from time to time to ensure that you are happy with any changes. This policy is effective from 18th October 2017. 


What we collect

We may collect the following information:

  • name and job title
  • contact information including email address and IP address
  • demographic information such as postcode, preferences and interests
  • other information relevant to supporter surveys


What we do with the information we gather

We require this information to understand the needs of our supporters and of families of people with Rett Syndrome so that we can provide a better service and in particular for the following reasons:

  • Internal record keeping
  • We may use the information to improve our services
  • We may periodically send promotional emails about new campaigns or other information which we think you may find interesting using the email address which you have provided
  • From time to time, we may also use your information to contact you for survey purposes. We may contact you by email, phone, fax or mail
  • We may process your data to customise the website or email communications we have with you. Some of these processes are automated. However, processing is conducted fairly, with use of robust statistical methods, and is tested thoroughly to minimise risks of mistakes or inaccuracies. Data is stored securely throughout all this processing.



We are committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online. Our Data Protection Officer, Lluis Mather, can be contacted at enquiries@reverserett.org.uk, regarding any queries you have regarding data security.


Links to other websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.


Controlling your personal information

You may request details of personal information which we hold about you under the Data Protection Act 1998, and under upcoming GDPR regualtions, effective 25th May 2018. In particular, you have the following rights with regard to the data we hold on you:

  • The right to be informed - detailed in this privacy policy, as to the nature and uses of your data, where and how it is held, and how it is used
  • The right of access - you have the right to obtain from Reverse Rett information regarding whether your data is being processed, access to your personal data, and other supplementary information
  • The right to rectification - if any of the data we hold on you is inaccurate or incomplete, we will rectify and amend where necessary
  • The right to erasure - if you no longer wish for Reverse Rett to hold or process your data, you may request us to erase your records
  • The right to restrict processing - you may request that we no longer process your data
  • The right to data portability - as detailed below
  • The right to object - if you object to your data being collected or used, will will stop processing this data


You may also choose to restrict the collection or use of your personal information in the following ways:

  • Whenever you are asked to fill in a form on the website, look for the box that you can click to indicate whether you do or do not give consent for your information to be used by Reverse Rett for direct marketing purposes
  • If you have previously agreed to Reverse Rett using your personal information for direct marketing purposes, you may change your mind at any time by writing or emailing our Data Protection Officer, Lluis Mather, at enquiries@reverserett.org.uk


If you would like a copy of the information held on you please write to:

Suite 2B
Paragon House
Seymour Grove

There may be a small fee for doing so. If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible, at the above address. We will promptly correct any information found to be incorrect.

We will not sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so. Finally, we may occasionally use your personal information to send you promotional information about third parties which we think you may find interesting if you give us your consent.