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SOFT UK Privacy Statement

At SOFT UK we are committed to respecting your privacy and protecting your information

This statement explains when and why we collect personal information about people who use our services, how we use it, the conditions under which we may disclose it to others and how we keep it secure.

We may change this Policy from time to time so please check this page occasionally to ensure that you're happy with any changes.

Any questions regarding this Policy and our privacy practices should be sent by email to


Who are we?

We are SOFT UK, a charity registered in England and Wales with the Charities Commission (1002918) and in Scotland with OSCR (SC043341). We provide information and support to families in the UK affected by Trisomy 13 (Patau’s Syndrome), Trisomy 18 (Edward's Syndrome) and related disorders. 

How do we collect information from you?

We obtain information about you when;

  • You use our website
  • You make an enquiry to SOFT UK
  • You request membership of SOFT UK
  • You fundraise for us or make a donation
  • You volunteer for us
  • You attend our events 

What type of information is collected from you?

  • Personal identifying information such as name, contact details, address, etc.
  • Our website records IP address, cookies and general usage statistics
  • The content of messages you send us via email, the website or social media
  • Bank/paypal details of donors
  • Content you send us for publication in our newsletter, social media, website or other publications. This may include photographs.  

How is your information used?

We may use your information to:

  • Enrol you as a member of SOFT UK;
  • Add you to mailing lists you have requested to join;
  • Send you information or other materials you have requested;
  • Recruit you as a volunteer;
  • Process a donation that you have made;
  • Manage bookings for our events;
  • Seek your views or comments on the services we provide;
  • Process applications for financial assistance;
  • Be published with your consent in our printed materials, website and social media accounts

We review our retention periods for personal information on a regular basis. We are legally required to hold some types of information to fulfil our statutory obligations (for example the collection of Gift Aid). We will hold your personal information on our systems for as long as is necessary for the relevant activity. 

Who has access to your information?

Access to all data is strictly restricted to those staff, trustees and volunteers that require to use it for the purposes for which it is intended.

We will not share your information with Third Parties for any purpose without your specific consent. 

Third Party Service Providers working on our behalf

We work with a number of third party services in order to manage our services.  In particular we rely on third party companies to process our donations and provide online fundraising platforms, etc.

When you are redirected to these providers from our website or materials, their own terms and conditions will apply. You will have the same opportunities to provide consent in relation to your data on their platforms as you do with SOFT UK. 

Your choices

You have a choice about whether or not you wish to receive information from us. If you do not want to receive direct communications from us  then you can select your choices by ticking the relevant boxes situated on the form on which we collect your information.

We will not contact you unless you have given your prior consent.

You can change your privacy preferences at any time by contacting us by email:


How you can access and update your information

The accuracy of your information is important to us. We're working on ways to make it easier for you to review and correct the information that we hold about you. In the meantime, if you change email address, or any of the other information we hold is inaccurate or out of date, please email us at:

You have the right to ask for a copy of the information SOFT UK hold about you. To do this, please email us on


Security precautions in place to protect the loss, misuse or alteration of your information

When you give us personal information, we take steps to ensure that it's treated securely. We use Third Party websites to process things like payments to ensure the most up to date security.

Non-sensitive details (your email address etc.) are transmitted normally over the Internet, and this can never be guaranteed to be 100% secure. As a result, while we strive to protect your personal information, we cannot guarantee the security of any information you transmit to us, and you do so at your own risk. Once we receive your information, we make our best effort to ensure its security on our systems. 


SOFT UK does not currently undertake any profiling of our members or other users of our services. 

Use of 'cookies'

Like many other websites, the SOFT UK website uses cookies. 'Cookies' are small pieces of information sent by an organisation to your computer and stored on your hard drive to allow that website to recognise you when you visit. They collect statistical data about your browsing actions and patterns and do not identify you as an individual. This helps us to improve our website and deliver a better more personalised service.

It is possible to switch off cookies by setting your browser preferences.  Turning cookies of may result in a loss of functionality when using our website. 

Links to other websites

Our website may contain links to other websites run by other organisations. This privacy policy applies only to our website so we encourage you to read the privacy statements on the other websites you visit. We cannot be responsible for the privacy policies and practices of other sites even if you access them using links from our website.

In addition, if you linked to our website from a third party site, we cannot be responsible for the privacy policies and practices of the owners and operators of that third party site and recommend that you check the policy of that third party site. 

16 or Under

We are concerned to protect the privacy of children aged 16 or under. If you are aged 16 or under please get your parent/guardian's permission beforehand whenever you provide us with personal information. 

Review of this Statement

We keep this Policy under regular review. This Statement was agreed by the Board of Trustees in May 2018.

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.