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Privacy Policy

How privacy is respected when personal information collected by our organisation is dealt with

This Privacy Policy applies to information we, Bedfordshire Down’s Syndrome Support Group (Charity Number 1102599) and our trustees and our officially appointed representatives (“BDSSG”), collect about individuals who interact with BDSSG. It explains what personal information BDSSG collects and how BDSSG uses it.

If you have any comments or questions about this notice, feel free to contact BDSSG at

1. Personal data that BDSSG processes

The following table explains the types of data BDSSG collects and the legal basis, under current data protection legislation, on which this data is processed.


Data (key elements)


Enquiring about BDSSG and its work

Name, email, message and phone numbers

Legitimate interests – it is necessary for BDSSG to read and store your message so that BDSSG can respond in the way that you would expect.

Subscribing to email updates about BDSSG work (eg Newsletter)

Name, email

Consent – you have given your active consent.

Making a donation (whether via PayPal, Virgin Money Giving, Facebook Giving, PayPal Giving, sponsorship form etc.)

Name, email, address, phone numbers, payment and GiftAid related information

Legitimate interests – this information is necessary for BDSSG to fulfil your intention of donating money (including the claiming of any applicable GiftAid), identify large donors (to comply with the Charities (Protection and Social Investment) Act 2016 and follow the recommendations of the official regulator of charities, the Charity Commission) and, in relevant circumstances, your expectation of receiving a confirmation message.

Participating in events, clubs, social events, fundraising activities etc. organised by BDSSG (eg speech therapy, Young Adults’ Group etc.)

Name, email, address, phone numbers, dates of birth, health, education and developmental information and payment information

Legitimate interests – this information is necessary for BDSSG to fulfil your intention of participating in events, clubs, social events, activities etc. organised by BDSSG.

Signing up as a member of the BDSSG (including sharing information with other representatives of BDSSG for the specific purpose)

Name, email and phone numbers

Consent – you have given your active consent to storage of information because you have signed up as a member

Website functionality

Website activity collected through cookies

Legitimate interests

– it is necessary for BDSSG to store a small amount of information, usually through cookies, to deliver functionality that you would expect.

Advertising the activities of BDSSG

Name and images/likenesses

Consent – you have given your explicit active consent by way of a photo consent form

Please note that, owing to the nature of the work carried out by BDSSG, information referred to in the above table will also include information relating to minors, dependents etc. in connection with accessing the services provided by BDSSG and any permissions and consents will be deemed to apply to them should those individuals be under the age of 18 at the time when permission is given.

2. How BDSSG uses your data

BDSSG will only use your data in a manner that is appropriate considering the basis on which that data was collected, as set out in the table at the top of this policy.

For example, BDSSG may use your personal information to:

  • reply to enquiries you send to BDSSG;
  • handle donations or other transactions that you initiate;
  • where you have specifically agreed to this, send you marketing communications by email relating to the work of BDSSG which BDSSG think may be of interest to you.

3. When BDSSG shares your data

BDSSG will only pass your data to third parties in the following circumstances:

  • you have provided your explicit consent for BDSSG to pass data to a named third party or BDSSG are doing so solely to fulfil your legitimate interests in accessing the services provided by BDSSG;
  • BDSSG are using a third party purely for the purposes of processing data on behalf of BDSSG and BDSSG have in place a data processing agreement with that third party that fulfils BDSSG’s legal obligations in relation to the use of third party data processors; or
  • BDSSG are required by law to share your data.

In addition, BDSSG will only pass data to third parties outside of the EU where appropriate safeguards are in place as defined by Article 46 of the General Data Protection Regulation.

4. How long BDSSG keeps your data

BDSSG takes the principles of data minimisation and removal seriously and have internal policies in place to ensure that BDSSG only ever asks for the minimum amount of data for the associated purpose and deletes that data once it is no longer required.

Where data is collected on the basis of consent, BDSSG will seek renewal of consent at least every three years after the initial consent was given.

5. Rights you have over your data

You have a range of rights over your data, which include the following:

  • where data processing is based on consent, you may revoke this consent at any time and BDSSG will make it as easy as possible for you to do this (for example by putting ‘unsubscribe’ links at the bottom of all marketing emails sent by BDSSG);
  • you have the right to ask for rectification and/or deletion of your information;
  • you have the right of access to your information;
  • you have the right to lodge a complaint with the Information Commissioner if you feel your rights have been infringed.

A full summary of your legal rights over your data can be found on the Information Commissioner’s website here:

If you would like to access the rights listed above, or any other legal rights you have over your data under current legislation, please get in touch with BDSSG at

Please note that relying on some of these rights, such as the right to deleting your data, will make it impossible for BDSSG to continue to deliver some services to you. However, where possible BDSSG will always try to allow the maximum access to your rights while continuing to deliver as many services to you as possible.

6. Cookies & usage tracking

A cookie is a small file of letters and numbers that is downloaded on to your computer when you visit a website. Cookies are used by many websites and can do a number of things, eg remembering your preferences, recording what you have put in your shopping basket, and counting the number of people looking at a website.

Where cookies are used to collect personal data, BDSSG have referred to these purposes in section 1 above, along with other personal data that BDSSG collects. However, BDSSG also uses some cookies that do not collect personal information but that do help BDSSG collects anonymous information about how people use the BDSSG website.

BDSSG uses Google Analytics for this purpose.  Google Analytics generates statistical and other information about website usage by means of cookies, which are stored on users’ computers. The information collected by Google Analytics about usage of the BDSSG website is not personally identifiable. The data is collected anonymously, stored by Google and used by BDSSG to create reports about website usage. Google’s privacy policy is available at

7. Modifications

BDSSG may modify this Privacy Policy from time to time and will publish the most current version on the BDSSG website. If a modification meaningfully reduces your rights, BDSSG will notify people whose personal data are hold by BDSSG and are affected.