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 GDPR 2018. Should we ask you to provide certain information by which you can be identified when using this website, you can be assured that it will only be used in accordance with this privacy statement.

Reverse Rett may change this policy by updating this page. You should routinely check this page to ensure that you are happy with any changes. This policy is effective from 13th February 2020.

What we collect – personal data

Reverse Rett gathers, processes and retains data for use as a registered charity. Reverse Rett also retains and processes data that is necessary for the administrative purposes of its own internal governance, and that of the patient registry.

We collect data in a number of circumstances, such as when:

  • You fill out a form on this website, or you fill out forms at a Reverse Rett event
  • You interact with us online, including on Facebook, Twitter, Instagram, on our website
  • You donate or volunteer with Reverse Rett
  • You sign up to our patient registry

Some of this includes data that you don’t share with us directly, but that is shared with us by other organisations with your permission, and we only process this data if we have your consent to do so. This might happen if you have used independent fundraising platforms such as JustGiving, and we may collect data such as:

  • 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

We may also collect data from publicly available sources such as Companies House, the Charity Commission or Land Registry. This information will be used to understand your philanthropic interests and activities, enabling us to understand how likely you are to support Reverse Rett’s work. This helps us understand our supporters better and helps us make appropriate request for your support and ensures that we are making best use of our time and resources. 

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 for use in 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
  • As part of our day-to-day work, we may engage service providers who operate on our behalf. In these circumstances, they will only have access to the personal information they need to fulfil that service and will only use that information strictly for the purposes for which they have been instructed by us

Examples of service providers include payment providers who processes donations for us, or a mailing service who send and record e-communications on our behalf. Any data they pass to us is done with your permission.

What we collect – protected data

In addition to personal data as specified above, we also hold data that is considered protected under the GDPR as a part of our patient registry. We have compiled this patient registry in line with our charitable objectives to further the search for a cure to Rett Syndrome.

These data are held by us and are strictly used only for the processes that you have explicitly agreed to. They will not be shared with any third-party company without your explicit prior consent.


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. You can contact Reverse Rett’s Data Protection Officer at [email protected] regarding any concerns or 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.

Data Retention

Reverse Rett will only retain data for as long as it is required to meet the purposes set out in this privacy policy. Different purposes will have different retention periods. Reverse Rett will then delete these records securely.

Controlling your personal information

You may request details of personal information which we hold about you under the Data Protection Act 1998 and under GDPR regulations. 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 for 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 – by submitting a subject access request to [email protected]
  • The right to object – if you object to your data being collected or used, we will stop processing this data

If you would any further information, or to submit a subject access request, please write to:

[email protected]


Data Protection Officer, Reverse Rett, Statham Link 1F, Lancastrian Office Centre, Talbot Rd, Manchester, M32 0FP

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.

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