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 17th April 2018.
What we collect – personal data
We may collect the following information that you share with us directly. This covers information that you don’t share with us directly, but that is shared with us by other organisations with your active permission. This might happen if you have used independent fundraising platforms such as JustGiving.
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:
Examples of service providers include a payment provider who processes donations for us, or a mailing service who sends and records e-communications on our behalf. These service providers will under no circumstances contact you or pass your information on to any other third party who may do so.
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. Our Data Protection Officer Oliver Perkins, can be contacted at firstname.lastname@example.org, 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 regulations, effective 25th May 2018. In particular, you have the following rights with regard to the data we hold on you:
You may also choose to restrict the collection or use of your personal information in the following ways:
If you would like a copy of the information held on you please write to:
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.