Privacy Policy


The National Down Syndrome Policy Group is committed to a policy of protecting the rights and privacy of individuals in accordance with the General Data Protection Regulation (GDPR) which became law in May 2018. 

Data protection principles

The National Down Syndrome Policy Group is committed to processing data in accordance with its responsibilities under the GDPR.

Article 5 of the GDPR requires that personal data shall be:

The National Down Syndrome Policy Group is committed to protecting your privacy. We are dedicated to ensuring  all information you give to us is held securely and is only used in a manner that you have consented to or would expect.

How we collect personal information about you?

We may collect personal information from you when you interact with The Down Syndrome Policy Group. There are many occasions when this could happen, for example: if you enquire about our charity, register with us, make a donation to us, or otherwise provide us with personal information. We collect data from you when you interact with us online, face to face, by post, over the phone or via SMS.

What information do we collect?

The personal data we collect may include your name, address, telephone number, email address, occupation, areas of special interest or expertise, family details, whether you or  family member has Down Syndrome and sometimes bank details if you are making a donation. We will only collect data which is relevant to the purpose for which you have given it.

Collecting specific, minimal and relevant special category data will enable The National Down Syndrome Policy Group to provide appropriate resources and information. This will enable the National Down Syndrome Policy Group to process data to ensure support for all those with Down Syndrome and their families, to raise awareness of the condition and to promote equality of opportunity and treatment. The National Down Syndrome Policy Group will sometimes ask for your consent to collect, store and process special category data regarding race or ethnic origin, political opinions, genetic data and data concerning health your health. You can refuse or withdraw consent at anytime and still be a member of The National Down Syndrome Policy Group and participate as fully as your consent allows. If you withdraw your consent, all special category data we have collected from you will be deleted from our records. You can request their special category data be deleted from their records by contacting the Data Officer Lucienne Cooper at

We also gather general information about the use of our websites, such as which pages users visit most often and which services, events or facilities are of most interest. We may also track which pages users visit when they click on links in The National Down Syndrome Policy Group’s emails. We may use this information to personalise the way our website is presented when users visit it, to make improvements to our website and to ensure we provide the best service for users.

How will we contact you?

We may contact you via post, email, telephone or SMS text. However, we will only contact you by the channel you have told us you wish to receive communications by and where we have received your consent to do so.

As a new member, we will aim to capture your consent for Direct Marketing purposes. We will consider consent to remain valid while you are financially supporting us or receiving our regular communications and have not objected to doing so.

You can give or withdraw consent to Direct Marketing, or change your contact preferences, at any time by emailing us at Please let us know if you change your contact details or if you believe any information we hold is incorrect.


Cookie‘ is a name for a small file, usually of letters and numbers, which is download onto your device, like your computer, mobile phone or table when you visit a website.  They let websites recognise your device, so that the sites can work, or work better, and also gather information about how you use the site. A cookie, by itself, can’t be used to identify you.

We use cookies to distinguish you from other users of our website. This helps us to provide you with a good experience when you come to our website and also allows us to improve our site.  You can opt out of all our cookies (except the strictly necessary ones). Find out how to control and delete cookies in your browser.

How do we use your personal data?

The Charity shall ensure that personal data is adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed.

The purpose of collecting personal data is:

How we store your data

We take the security of your personal information extremely seriously. The personal information we collect about you will be used by the Trustees, organisations and volunteers working on behalf of The National Down Syndrome Policy Group. Trustees, organisations and volunteers working on behalf of The National Down Syndrome Policy Group all follow the requirements for collecting, storing and processing personal data as detailed in our GDPR policy.

The National Down Syndrome Policy Group:

Data security

The National Down Syndrome Policy Group will take all reasonable care to safeguard your personal information through security policies and processes.

In relation to us processing your personal data you have the following rights, which can be exercised at any time.:

This does not however include any data we are obliged to keep for administrative, legal, or security purposes 

What else you should know about privacy

Our pages may contain links to other websites, and you should be aware that we are not responsible for the privacy practices on other websites. 

How to access or update your personal information

You may ask us at any time to update your details, correct or remove information you think is inaccurate by contacting us at

Changes to our privacy policy

Our Privacy Policy is reviewed regularly to ensure that it reflects how we use your information. Any changes will be notified to you by updating this policy so please check this Policy to see if any changes have been made that are important to you. Where appropriate, changes will be notified to you by email.

24th March 2021