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Privacy policy

Who we are

DOWN SYNDROME INTERNATIONAL is a UK based international disabled people's organisation, comprising a membership of individuals and organisations from all over the world, committed to improving quality of life for people with Down syndrome, promoting their right to be included on a full and equal basis with others. DOWN SYNDROME INTERNATIONAL is a UK registered charity no. 1091843.
DOWN SYNDROME INTERNATIONAL is a large charity with relationships with thousands of fundraisers, volunteers, supporters and researchers, so we use personal information on a day to day basis in order to operate. This policy describes how and why DOWN SYNDROME INTERNATIONAL uses your personal information, how we protect your privacy when doing so, and your rights and choices regarding this information. We promise to respect any of your personal information which is under our control and to keep it safe.  We aim to be clear when we collect your information about what we will do with it. 
DOWN SYNDROME INTERNATIONAL is committed to the 8 principles of data protection as detailed in the UK GDPR Act 2016. These principles require that personal information must:
  1. be fairly and lawfully processed and not processed unless specific conditions are met;
  2. be obtained for one or more specified, lawful purposes and not processed in any manner incompatible with those purposes;
  3. be adequate, relevant and not excessive for those purposes;
  4. be accurate and, where necessary, kept up to date;
  5. not be kept for longer than is necessary;
  6. be processed in accordance with the data subject’s rights under the DPA;
  7. be kept secure from unauthorised or unlawful processing and protected against accidental loss, destruction or damage;
  8. not be transferred to countries outside the European Economic Area (EEA) unless the country or territory ensures adequate protection for the rights and freedoms of the data subjects.


What personal information we collect

DOWN SYNDROME INTERNATIONAL collects personal information that you provide that can be used to identify you as an individual and may include your name, address, telephone number and email address. DOWN SYNDROME INTERNATIONAL will only do this when you have agreed to DOWN SYNDROME INTERNATIONAL's request for that personal information. Your information may also be shared with us by third parties, for example, independent event organisers, such as Glow in the Park or fundraising sites like Just Giving or Virgin Money Giving. You should check any privacy policy provided to you where you give data to a third party.
How we use personal information
We may use your personal information to:
  • improve services for people with Down Syndrome;
  • provide you with the services, products or information you asked for;
  • respond to or fulfil any requests, complaints or queries you make to us;
  • send you newsletters and other regular mailings that you have asked to receive;
  • support your fundraising or administer your donation, including processing Gift Aid;
  • understand how we can improve our services, products or information by conducting analysis and market research;
  • manage our events;
  • process applications for funding and for administration of our role in the projects we fund;
  • generate reports on our work, services and events;
  • process your application for a job or volunteering position.
DOWN SYNDROME INTERNATIONAL will act as a data controller of such personal data.
DOWN SYNDROME INTERNATIONAL will only collect personal data to serve a specific business, commercial, or legal purpose and only gather the minimum amount needed. DOWN SYNDROME INTERNATIONAL  will use only fair and lawful means to obtain the personal data.
DOWN SYNDROME INTERNATIONAL will be transparent in dealings with data subjects whose personal data DOWN SYNDROME INTERNATIONAL holds.
DOWN SYNDROME INTERNATIONAL will obtain a data subject’s informed consent to process his or her personal data in cases where it is necessary and appropriate to do so in compliance with applicable laws.
DOWN SYNDROME INTERNATIONAL will not use personal data collected for one purpose for a different purpose without getting the data subject’s consent, unless applicable laws allow or require it.
DOWN SYNDROME INTERNATIONAL will correct any personal data where it is notified that such personal data is incorrect.
Only authorised paid employees, trustees and volunteers of DOWN SYNDROME INTERNATIONAL and third party suppliers can carry out processing of personal data, which must be consistent with their individual roles and responsibilities.
Personal data will be held in accordance with the safeguards in the DOWN SYNDROME INTERNATIONAL Security Guidelines.
How we protect your personal data
We ensure that there are appropriate legal, organisational and technical measures to protect your personal information. When DOWN SYNDROME INTERNATIONAL uses a third party service provider, that provider will be carefully selected and required to use appropriate measures to protect the confidentiality and security of personal data.
When we collect your personal information we use strict procedures and security features to prevent unauthorised access. Unfortunately, no data transmission over the Internet is 100% secure. As a result, while we try to protect your personal information, DOWN SYNDROME INTERNATIONAL cannot guarantee the security of any information you transmit to us and you do so at your own risk.

Sharing personal data with third parties

Sometimes DOWN SYNDROME INTERNATIONAL uses selected third parties to provide support services in the normal course of business. These parties may, from time to time, have access to your personal data to enable them to provide those services to DOWN SYNDROME INTERNATIONAL. DOWN SYNDROME INTERNATIONAL requires all third parties providing such support services to meet the same standards of data protection as DOWN SYNDROME INTERNATIONAL’s own. Any third party will be prohibited from using your personal data for that third party’s own purposes. In particular, DOWN SYNDROME INTERNATIONAL will not allow service providers to use your personal data for the marketing activities of that service provider.
Your data may also be available to our website provider to enable us and them to deliver their service to us, carry out analysis and research on demographics, interests and behavior of our users and supporters to help us gain a better understanding of them to enable us to improve our services.  This may include connecting data we receive from you on the website to data available from other sources.  Your personally identifiable data will only be used where it is necessary for the analysis required, and where your interests for privacy are not deemed to outweigh their legitimate interests in developing new services for us.  In the case of this activity the following will apply:
  1. Your data will be made available to our website provider
  2. The data that may be available to them include any of the data we collect as described in this privacy policy.
  3. Our website provider will not transfer your data to any other third party, or transfer your data outside of the EEA.
  4. They will store your data for a maximum of 7 years.
  5. This processing does not affect your rights as detailed in this privacy policy
DOWN SYNDROME INTERNATIONAL may share personal information in compliance with applicable law. DOWN SYNDROME INTERNATIONAL may disclose your personal data:
  • when DOWN SYNDROME INTERNATIONAL has reason to believe that disclosure of this information is necessary to identify, contact or bring legal action against someone who may be causing injury to you or otherwise injuring or interfering with DOWN SYNDROME INTERNATIONAL’s rights, property or operations, other users of this website or any mobile application or anyone else who could be harmed by such activities;
  • when DOWN SYNDROME INTERNATIONAL believes that applicable law requires it, or in response to any demand by law enforcement authorities in connection with a criminal investigation, or civil or administrative authorities in connection with a pending civil case or administrative investigation.
Personal data collected may be transferred to, stored and processed in your country of residence or any other country in which DOWN SYNDROME INTERNATIONAL, subcontractors or agents maintain facilities, including the United States and countries outside the European Economic Area (EEA). DOWN SYNDROME INTERNATIONAL will ensure that if your personal data is transferred outside your country of residence, it will still be treated in accordance with this Policy.
Unless otherwise specified in the website the DOWN SYNDROME INTERNATIONAL will not sell or license your personal data to other third parties.


DOWN SYNDROME INTERNATIONAL's website and mobile applications uses technology called “cookies.” A cookie is a small text file that is placed on your hard disk by a server. Cookies allow the DOWN SYNDROME INTERNATIONAL website and mobile applications to respond to you, the data subject, as an individual. The website or mobile application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.
For instance, the DOWN SYNDROME INTERNATIONAL server may set a cookie that keeps you from having to enter a password more than once during a visit to a website.
You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies or receive a warning before a cookie is stored if you prefer. Please refer to your Internet browser’s instructions or help screen to learn more about these functions and to specify your cookie preferences.
If you choose to decline cookies, you may not be able to fully experience the interactive features of our websites or any other websites that you visit.

Links to other websites

DOWN SYNDROME INTERNATIONAL’s website (and any mobile applications, if any) may from time to time provide links to or embed third party websites. This DOWN SYNDROME INTERNATIONAL Policy does not apply to those third party websites. If you choose to enter such a linked site, you agree that DOWN SYNDROME INTERNATIONAL is not responsible for the availability of such websites and DOWN SYNDROME INTERNATIONAL does not review or endorse and shall not be liable, directly or indirectly, for:
  • how these third party websites treat your personal data;
  • the content of such third party websites; or
  • the use that others make of these third party websites.
Please ensure you check the data protection policy posted on a third party website or mobile application you access before entering any personal data.

Use of IP addresses

An IP address is a set of numbers that is automatically assigned to your computer whenever you log on to your Internet service provider or through your organisation’s local area network (LAN) or wide area network (WAN). Web servers automatically identify your computer by the IP address assigned to it during your session online.
DOWN SYNDROME INTERNATIONAL, or third party companies acting on its behalf, may collect IP addresses for the purposes of systems administration and to audit the use of DOWN SYNDROME INTERNATIONAL’s website. DOWN SYNDROME INTERNATIONAL also may use IP addresses to identify users of DOWN SYNDROME INTERNATIONAL’s websites when DOWN SYNDROME INTERNATIONAL feels it is necessary to enforce compliance with the websites’ terms of use or to protect the service, website or other users.

Access to information – Subject Access Request

DOWN SYNDROME INTERNATIONAL will retain your information only for the period necessary to fulfil the purposes outlined in this DOWN SYNDROME INTERNATIONAL Policy unless a longer retention period is required or permitted by applicable law. Anyone who is the subject of personal data held by DOWN SYNDROME INTERNATIONAL has the right to make a subject access request to request the updating, correcting or removal of personal data that has been provided to us, at any time, using the contact information provided at the end of this DOWN SYNDROME INTERNATIONAL Policy. Applicable laws may also give you the right to access information that you have provided to DOWN SYNDROME INTERNATIONAL.
DOWN SYNDROME INTERNATIONAL reserves the right to charge £10 for responding to such requests. If, as the result of a subject access request, any personal data is found to be incorrect it will be amended. DOWN SYNDROME INTERNATIONAL will deal promptly with subject access requests and will normally respond within 40 days. If there is a reason for delay, the person making the request will be informed accordingly.


DOWN SYNDROME INTERNATIONAL will update this DOWN SYNDROME INTERNATIONAL Policy to take account of changes in working practice or applicable law. If the changes that DOWN SYNDROME INTERNATIONAL makes are material, DOWN SYNDROME INTERNATIONAL also may post a notice regarding the changes on its websites or mobile applications. DOWN SYNDROME INTERNATIONAL encourages you to periodically review this DOWN SYNDROME INTERNATIONAL Policy to stay informed about how DOWN SYNDROME INTERNATIONAL is helping to protect the personal data that DOWN SYNDROME INTERNATIONAL collects. Your action in continuing to use DOWN SYNDROME INTERNATIONAL websites and mobile applications constitutes your agreement to this DOWN SYNDROME INTERNATIONAL Policy and any updates. Subsequent changes in this DOWN SYNDROME INTERNATIONAL Policy will not apply to personal data that were collected before the change is made. DOWN SYNDROME INTERNATIONAL reserves all of its all legal rights.


References to “we,” “us” and “our” are references to DOWN SYNDROME INTERNATIONAL. Please address any questions, comments and requests regarding this DOWN SYNDROME INTERNATIONAL Policy to DOWN SYNDROME INTERNATIONAL using the contact information below. If you contact DOWN SYNDROME INTERNATIONAL, please provide information as to how DOWN SYNDROME INTERNATIONAL may contact you.
To contact DOWN SYNDROME INTERNATIONAL call 0044 (0)1395 493108 or email contact@ds-int.org