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Privacy Policy

PSPA is committed to protecting and respecting your privacy

The purpose of this Policy is to explain when and why we collect your personal information when you visit our website, how we use it, the conditions under which we may disclose it to others and how we keep it secure.

The Policy is regularly reviewed so please check this page occasionally to ensure that you’re happy with any changes we may make. We will post a notice on our homepage for a period of 2 weeks to highlight any changes, but please note that by using our website, you’re agreeing to be bound by this Policy.

Any questions regarding this Policy should be sent by email to or by writing to PSPA, Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN

About us

PSPA is the only UK charity dedicated to creating a better future for everyone affected by Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). PSPA is a registered charity in England and Wales (no. 1037087), and in Scotland (no. SC041199). Our registered address is PSPA, Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN.

How we collect information from you

We obtain information about you when you use our website. For example: when you register to join PSPA; consent to receive email newsletters and our PSPA Matters magazine; contact our Helpline about products and services; make a donation; sign-up to fundraising activity via our website: and, when you make a shop purchase.

Information that we might collect from you

The personal information we collect might include your name, address, email address, IP address, and information regarding which pages on our website you have accessed and when. If you register online to join PSPA, we will store information regarding your interest in joining us and your contact preferences. If you consent to receiving a phone call from us after your registration, we may capture further information, including about: your illness and diagnosis; your role as a carer; your interest in fundraising, research or volunteering; or your desire to become a supporter of PSPA.

If you make a donation online or purchase a product from our shop, your card information is not retained by us. It is collected by our third-party payment processors, who specialise in the secure online capture and processing of credit/debit card transactions. You will be protected by those organisations’ privacy policies.

Our Data Retention Policy and GDPR Policy governs the use and storage of your data.

How we might use your information

We might use your information to:

  • register an account in your name
  • send you any communications that you have requested and that may be of interest to you, including information about PSPA and it’s: research programmes; campaigns; appeals; other fundraising activities; and, volunteering roles and projects
  • process a donation that you have made
  • process orders that you have submitted to our shop
  • process entries to a competition or raffle
  • seek your opinions or comments on our services
  • notify you of changes to our services
  • process a grant or job application
  • analyse your data anonymously for statistical and research purposes
  • process payments that we are obliged to make to you under any contracts we hold with you.

We are legally required to hold some types of information to fulfil our statutory obligations (for example the collection of Gift Aid and other taxes), but otherwise, we undertake to review how long we keep your personal information on a regular basis. We will hold your personal information on our systems for the time periods set out in our Data Retention Policy.

Who has access to your information?

We will not sell or rent your personal information to third parties or share your information for marketing purposes.

Third-Party Service Providers working on our behalf

As a fundraising organisation, we undertake in-house research and from time to time engage specialist agencies such to gather information about you from publicly available sources, for example, Companies House, the Electoral Register, company websites, ‘rich lists’, social networks such as Linkedin, political and property registers and news archives.

We may also carry out wealth screening to fast track the research using our trusted third party partners. You will always have the right to opt out of this processing. We may also carry out research using publicly available information to identify individuals who may have an affinity to our cause but with whom we are not already in touch. This may include people connected to our current major supporters, trustees or other lead volunteers. We also use publicly available sources to carry out due diligence on donors in line with the charity’s Gift Acceptance Policy and to meet money laundering regulations.

This research helps us to understand more about you as an individual so we can focus conversations we have with you about fundraising and volunteering in the most effective way, and ensure that we provide you with an experience as a donor or potential donor which is appropriate for you.

If you would prefer us not to use your data in this way, please email us at

Third-Party Product Providers we work in association with

In the future, we might work with third-party product providers to bring you a range of products and services designed to meet the needs of people with PSP & CBD, and their carers. If you inquire about or purchase one or more of these products, the relevant third party product provider will use your details to provide you with information and carry out their obligations arising from any contracts you have entered into with them. In some cases, they will be acting as a data controller of your information and therefore we advise you to read their Privacy Policy.  These third-party product providers will share your information with us which we will use in accordance with this Privacy Policy.

When you use our secure online donation page, your donation is processed by a third-party payment processor, who specialises in the secure online capture and processing of credit/debit card transactions. If you have any questions regarding secure transactions, please contact us.

Your options

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

We will not contact you for marketing purposes by email, phone or text message unless you have given your prior consent by opting-in to receive communications. We will not contact you for marketing purposes by post if you have indicated that you do not wish to be contacted. You can change your marketing options at any time by contacting us by email:; telephoning us on 01327 322 410; or writing to us at PSPA, Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN.

Accessing and updating your information

We are legally obliged to ensure the accuracy of the information we hold on you, and this 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 if you believe that any of the other information we hold is inaccurate or out of date, please email us at : telephone us on 01327 322 410; or write to us at PSPA, Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN.

You have the right to ask for a copy of the information PSPA hold about you. From 25 May 2018, you will be entitled to ask for a copy of the information we hold on you in machine-readable form so that it can be given to a third party of your choice. Please use our Data Subject Access Request Form if you require this information.

From 25 May 2018, there is no charge to request details of the information we hold about you.

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

We take the responsibility for handling your personal information very seriously. Whilst we do not hold sensitive information such as credit or debit card details, we only work with third-party companies who encrypt and protect your information with the minimum of 128 Bit encryption on SSL. When you are on a secure page, a lock icon will appear in front of the web page address such as with Chrome, Microsoft Edge etc.

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. Where we have given (or where you have chosen) a password which enables you to access certain parts of our websites, you are responsible for keeping this password confidential. We ask you not to share your password with anyone.

Your profile

We may analyse your personal information to create a profile of your interests and preferences so that we can contact you with information relevant to you. We do not make any use of additional information about you that may be available from external sources.

We may also use your personal information to detect and reduce fraud and credit risk.

Use of ‘cookies’

The PSPA website, in common with many other websites, uses cookies. ‘Cookies’ are small pieces of information sent by an organisation to your computer and to allow that website to recognise you when you visit. They may be used to collect statistical data about your browsing actions and patterns and but do not identify you as an individual.

It is possible to switch off cookies by setting your browser preferences, but this may reduce functionality when using our website.

Links to and from 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. Once you leave our website, we cannot be responsible for the privacy policies and practices of other sites even if you access them using links from our website. Similarly, we are not responsible for the privacy policies and practices of the owners of third-party websites that you used to link PSPA website.

16 or Under

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

Transferring your information outside the EU

We store your data centrally on Microsoft’s Azure platform. This may result in the information you provide to us being transferred to countries outside the European Union (EU). For example, this may happen if any of our servers are from time to time located in a country outside of the EU. These countries may not have similar data protection laws to the UK. By submitting your personal data, you’re agreeing to this transfer, storing or processing. If we transfer your information outside of the EU in this way, we will take steps to ensure that appropriate security measures are taken with the aim of ensuring that your privacy rights continue to be protected as outlined in this Policy.

If you use our services while you are outside the EU, your information may be transferred outside the EU in order to provide you with those services.

Website analysis

There are software applications available that monitor your use of our website to improve website design and usability as well as aggregated and statistical reporting. This software may record mouse clicks, mouse movements, page scrolling and any text keyed into website forms. The information collected does not include bank details or any sensitive personal data. Data collected in this way would be for PSPA’s internal use only.


In the event that you wish to complain about how we have handled your personal data, please contact Rebecca Packwood, Chief Executive by email at or in writing at PSPA, Margaret Powell House, 415a Midsummer Boulevard, Milton Keynes, MK9 3BN. Our Chief Executive will then look into your complaint and work with you to resolve the matter.

If you still feel that your personal data has not been handled appropriately according to the law, you can contact the Information Commissioner’s Office ( and file a complaint with them.

Review of this Policy

We keep this Policy under regular review. This Policy was last updated in January 2021.