How do we use your information?

How we use your information would largely depend on why you are providing it (See What information do we collect).

As an overview, we may use your information in the ways set out below:

  • We use your personal information to give you the information, support, services, or products you ask for.
  • We use your information to gain a full understanding of your situation so we can develop and offer you the best possible personalised services.
  • We use your information to keep a record of your relationship with us and for internal administrative purposes (such as our accounting and records), and to let you know about changes to our services or policies. We use your personal information to look into, and respond to, complaints, legal claims or other issues.
  • We use your personal information to claim Gift Aid on your donations.
  • We use personal data to carry out statistical analysis and research in order to help us to understand how we are performing and how we can improve our services and meet the needs of people that require our help.
  • We may also use your personal information for other purposes which we specifically notify you about and, where appropriate, obtain your consent.


Profiling and Analysis

Like many organisations operating in the charitable sector we may use the data you provide, sometimes together with data obtained elsewhere, to conduct profiling of our supporters or potential new supporters. This helps us manage our fundraising and communications efficiently and effectively so we can raise more to spend on finding a cure for ataxia and supporting those affected by ataxia. It also helps ensure you receive communications and requests for support that are relevant and of interest to you.

There are five main components of our profiling and analysis activity;

  1. Data Matching

We may combine the personal information you have provided to us with publicly available information. This means we can better tailor our communications and services towards you and those with a similar profile as yours.

Please see the external data sources list below for where we might obtain publicly available information about yourself.

  1. Segmenting

We conduct analysis of supporters by group (including interest areas, ataxia type, giving history, etc),post code or particular area where supporters may be based. This is to ensure that campaigns or mailings are sent to those who will be most interested or likely to respond. For example, if you have told us you are interested in medical research then you may be selected as part of segment of supporters who have told us the same thing who would receive information on research where a different segment who weren’t interested in research may not.

  1. Major Donor Analysis

We may carry out research to determine whether an individual could be a potential major donor. We may use publicly available information from third party sources such as listed below. The type of information we collect can include:

  • career overview
  • gift capacity
  • areas of interest
  • history of giving to us and others
  • how the individual is connected with us and others
  • public information on any philanthropic activities.
  1. High value event planning

We may also use publicly available information to produce short biographies of people who are due to meet with our leadership or attend an event that we may be hosting.

This helps our people to understand more about those we engage with, and their interests or connection to us.

  1. Ethical screening and minimising risk

As a registered charity, we are subject to a number of legal and regulatory obligations and standards. The public naturally expect charities to operate in an ethical manner and this is integral to developing high levels of trust and demonstrating our integrity. Ataxia UK is an organisational member of the Institute of Fundraising and is registered with the Fundraising Regulator. We ensure all our fundraising is compliant with the Code of Fundraising Practice.

This means that we may carry out background checks and appropriate due diligence on donors and potential donors or check donations to help protect the charity from abuse, fraud and/or money laundering and/or terrorist financing.

To comply with our obligations as a charity, we must take reasonable and appropriate steps to know who our donors are, particularly where significant sums are being donated. This means that we may conduct research, including accessing information which is already publicly available, on prospective donors, partners or volunteers to ensure it would be right for us to accept support whether that is from an individual or organisation. This will help to give assurance that the donation is not from an inappropriate source and to safeguard our reputation. This does not mean that we will question every donation, nor that we will research lots of personal and other details about every donor. Any information we do collect for this purpose will only consist of what is necessary for us to meet these requirements and will be processed in line with your rights


External Data Sources

External data sources include publicly available information such as Google, Companies House, Charity Commission and other charity registers, Who’s Who and Debrett’s guides, Electoral Roll, reputable newspaper articles, publications, company websites and biographies on professional networking sites as well as geographic and demographic information based on your postcode.


Direct Marketing

We use your information to send you communications about our work and how you can help us, for example, information about our campaigns, volunteering, fundraising activities and how you can donate to us.

Occasionally, we may include information from partner organisations or organisations who support us in these communications. Our forms have clear marketing preference questions and we include information on how you can say no to such marketing.

We rely on your consent for marketing communications by electronic means – including text, email and social media. We rely on legitimate interests for other means of marketing including post and live calls.

You can let us know if you would prefer not to receive these communications at any time by emailing [email protected] calling us on 020 7582 1444, or writing to our Data Protection Lead at: Ataxia UK, 12 Broadbent Close, London, N6 5JW.

Who do we share your information with?

We will not sell your details to any third parties, but in many cases we share your information with our trusted service providers who are authorised to act on our behalf, and associated organisations who work on our behalf, or whom we work with in partnership to deliver and improve services for people affected by ataxia. This includes organisations who fundraise on our behalf.

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 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.