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Privacy Policy

How we keep your personal information safe

This privacy policy sets out how the Ectodermal Dysplasia Society uses and protects any information that you give the Ectodermal Dysplasia Society when you use this website.

The Ectodermal Dysplasia Society is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when contacting us or using our website, then you can be assured that it will only be used in accordance with this privacy statement.

The Ectodermal Dysplasia Society 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 May 2018

This page, together with our terms of use and our cookies policy, will let you know exactly how we use and protect your personal information. If you have any questions about it please just send us an email info@edscociety.co.uk – we’d be delighted to help. Our postal address can be found in the contact us section of this website

What we collect

Personal information is any information that can be used to identify you. So, for example, if you donate money, request services or products, we may collect and process the personal information that you’ve provided. We may also collect information from you when you or if you complete a survey which we use for research purposes.
We may collect the following information:

  • name and title
  • contact information including email address
  • demographic information such as postcode
  • other information relevant to ectodermal dysplasia

Keeping your information up to date

To make sure we always have the most up-to-date information about how to contact you, we may from time to time update your records to reflect any changes to your personal information.

What we do with the information we gather

We require information to understand your needs and provide you with a better service, and in particular for the following reasons:

  • Internal record keeping.
  • We may use the information to provide you advice regarding Ectodermal Dysplasia and the services we provide.
  • We may periodically send newsletters, emails about fundraising or material promoting the values of the charity or other information which we think you may find interesting using the email address which you have provided.

How long will we keep your personal information

We always have your best interests at heart and your personal information will not be retained by the Ectodermal Dysplasia society for longer than necessary in relation to the purposes for which it was originally collected, or for which it was further processed, subject to certain legal obligations mentioned below.

We will retain personal data in accordance with our data retention policy, set out below. We review our data retention periods for personal information on a regular basis.

We hold personal information relating to:

  • donations you’ve made to us
    for 7 years since the date of your last donation
  • legacy donations
    if you indicate that you’d like to leave us a legacy gift we will retain personal data until 7 years after the legacy is received
  • subscribing to a newsletter
    you can unsubscribe at any time
  • making an enquiry for support
    for 3 years after last contact.

We are legally required to hold some personal information to fulfil statutory obligations, for example the collection of Gift Aid or to support certain financial transactions.

We will also hold information about your details so that we can respect your preferences for being contacted by us.

The law allows you to withdraw your consent to any particular usage of your data at any time without needing to specify a reason. You can withdraw your consent by emailing info@edsociety.co.uk

Where your information is stored

1.  Microsoft access/excel

2. Thunderbird(email) & paper from in individual files

3. Membership forms(paper copies)

4. New Contact forms(paper copies)

How we will contact you

 It is only with your support that we can continue to help those affected by Ectodermal Dysplasia. That is why we like to keep you posted about our work and how your support can make a difference and ways you can support us in the future.

We will however not contact you again if you ask us not to.

Updates or changes to the privacy policy

We reserve the right to make changes to this Privacy Policy. Each time you visit this site you should check this Privacy Policy to check that no changes have been made to any sections that are important to you. Where appropriate, any changes will be notified to you by email.


If you have any questions or concerns about this privacy policy and our privacy practices or if you wish to file a complaint, please contact by emailing info@edscociety.co.uk or calling +44 (0)1242 261322

You have the right to lodge a complaint with the Information Commissioners Office (ICO) if you believe your data has been processed in a way that does not comply with the GDPR. You can do so by calling the ICO helpline on 0303 123 1113 or via their website.