MS Society Privacy Notice

The MS Society promises to respect the personal information you provide to us. We don’t want to use it in a way that you won’t expect, so our Privacy Notice explains how we protect your privacy and how you can control how we use your personal information.

If you want to change the way in which we use your data or if you have a question about how your personal information is used please contact us using any of the methods below:

  • Email:
  • Phone: 0300 500 8084 Monday to Friday 9am to 5pm
  • Postal address: Supporter Care Team, MS Society, 372 Edgware Road, London, NW2 6ND


How we use your personal information

We use your personal information in a number of ways to:

  • provide you with the service or information you’ve requested.
  • handle the administration of your gift or donation when received via cash, cheque, credit/debit card, direct debit, standing order and charity vouchers or via our online fundraising partners.
  • handle the administration of Gift Aid and Gift Aid declaration forms.
  • improve our website and the range of services and products we provide.
  • provide you with useful information about events and conferences.
  • produce surveys for you to participate in.
  • assess whether you're eligible or suitable for services we provide - like assessing your grant application.
  • keep you informed of fundraising opportunities.
  • to contact you with appropriate marketing messages where you have given us permission to do so.
  • to pass your details when required over to the Health and Safety Executive, and where appropriate our insurers and our solicitors should you be involved in an accident or incident while on our premises or when taking part in one of our events or activities.

What personal information we hold about you?

We only ask you to supply information that we need in order to provide the service you have requested. We will normally ask you to provide us with:

  • your name
  • your contact details

But we may request other information where it’s appropriate and relevant, for example:

  • your bank details
  • your reasons for supporting the MS Society i.e. if you or a family member lives with the effects of MS
  • Information about your suitability or eligibility for a service – for example: information about your MS or the treatments you receive, to help us provide relevant information or support and tailor our services to meet your needs. Or information about your financial circumstances, in relation to your grant application
  • your profession
  • how you would like us to contact you
  • age or date of birth, where relevant to your participation in an event or activity
  • accessibility or medical information where relevant to your participation in an event or activity
  • details of any accident or incident you may have been involved in while on our premises or while taking part in one of our events or activities

While we mainly hold and use the information you provide directly to us, we may use other sources of information about you, including data derived from the electoral roll or affluence information, where they are from publicly available sources, or where you have given your permission for your data to be shared. 

We do this to help ensure that we only contact you (where you have given us permission) with appropriate communications or requests for support. We take great care in sourcing this information, but if you prefer us not to then please let us know:

  • Email:
  • Phone: 0300 500 8084 Monday to Friday 9am to 5pm
  • Postal address: Supporter Care Team, MS Society, 372 Edgware Road, London, NW2 6ND


We collect anonymised information about your visits to our websites using cookies. The information is invaluable to us to improve our website and ensure you are shown relevant content. More information about how we use cookies and how you can prevent this can be found in our Cookie Policy.

Where we collect your personal information from

We collect personal information about you in several ways:

  • via our website when you support us through making a donation; becoming a member or volunteer; applying for or taking part in, organising or attending a fundraising event; registering to take part in other types of non-fundraising events that we hold; accessing one of our group services; joining a campaign; or pledging a gift in your will.
  • when you contact our Supporter Care team by mail, phone, email or live chat.
  • when you contact us about one of our services – for example if you ask us to send you a publication, or speak to one of our staff or volunteers about how the MS Society can support you.
  • when you complete one of our online or paper-based surveys or purchase or order an item from our online shop.
  • when using our social forums.
  • when you submit an application for a support or research grant.
  • when you have used a social media platform to contact us – Facebook, Twitter, LinkedIn, Instagram or Google +.
  • via our network of groups.
  • via an accident and incident form when you have been involved in an accident or incident on one of our premises or when attending one of our events or activities.

We may collect your personal information from other organisations and sources. For example, if you take part in an event run by another organisation with which we partner, such as the London Marathon; when you raise funds via JustGiving, Give As You Live or similar websites; or through social media platforms e.g. Facebook, Twitter, LinkedIn,  Instagram or Google +.

When providing information to us via these channels you should check these companies’ privacy policies and settings to understand how they use your personal information. We always check that third parties and other organisations have consent from you to pass your information on to us.

Building profiles of supporters and targeting our communications

We use profiling techniques to ensure communications are relevant and timely, to target our resources effectively, and to provide an improved experience for our supporters. These activities allow us to understand the background of people who support us and help us to make appropriate requests to supporters who may be able and willing to give more than they already do. Importantly, it enables us to raise more funds, sooner, and more cost-effectively, than we otherwise would, so that we can ultimately stop MS.

When building a supporter profile we may analyse geographic, demographic and other information relating to you to better understand your interests and preferences in order to contact you with the most relevant communications. In doing this, we may use additional information from third party sources when it is available.

Such information is compiled using publicly available data about you, for example from Companies House, information published in any type of media including magazines and newspapers, listed directorships or typical earnings in a given area. All this type of profiling is done under our internal processes and procedures that ensure we have the correct permissions to do so.

If you do not want us to carry out this type of profiling then please let us know by contacting our Supporter Care team on 0300 500 8084 or via email

How we use your personal information for marketing and fundraising

We only use your personal information for marketing where you have given us permission to do so or you have provided permission to other organisations to allow us to market to you, for example, via Facebook or JustGiving.

Like all organisations we rely on marketing to help support the work we do and by using the information you provide to us we are able to contact you with specific marketing messages that we feel will be appropriate to you. Depending on the permission you have given us or another organisation this may be by post, email, telephone, SMS or social media.

To assist us in our marketing, in addition to the data that you provide to us, we may also obtain data from trusted third parties to help us understand what you might be interested in. This ‘profiling’ information is produced from a variety of sources, including publicly available data (such as the electoral roll) or from sources such as surveys and polls where you have given your permission for your data to be shared.

We understand that our supporter’s circumstances change and you can easily withdraw the permissions you have given us, at any time either by using our contact details in this policy or by using the methods we tell you about in our communications e.g. using the ‘unsubscribe’ link on our emails.

Who we share your data with

We do not share or sell your data to any other charity or company for marketing purposes.

However, there are some situations where we use trusted suppliers to help us with administration of the services you have asked us to supply to you for example:

  • mailing houses to despatch our newsletters, appeals and raffles or invitations for our events and fundraising materials.
  • agencies who handle your donations on our behalf or administer your online conference bookings.
  • companies who deliver bespoke events for us (e.g. our bespoke overseas challenges) or who organise events in which we purchase charity places (e.g. the London Marathon).
  • organisations or individuals who work with us to provide services for you – such as  providing you with tailored advice or advocacy services, or local services such as exercise classes or complementary therapies.
  • companies who help us campaign on your behalf, for example to lobby your local MP.
  • website hosting companies which we use to administer our website content.
  • a database company who support us in keeping all our records in order.
  • as and when required we will share accident and incident information with the Health and Safety Executive, our insurers and our solicitors.

We also use trusted suppliers to help us with marketing:

  • email service providers to send our emails and manage your marketing permissions.
  • mailing houses to send out marketing by post.
  • telemarketing agencies to contact you by phone or SMS.
  • an organisation which helps us keep your information accurate and up to date.

Some of our suppliers may operate outside the European Economic Area (EEA). This requires us to ensure they provide an adequate level of protection in accordance with UK data protection law, for example the EU-US Privacy Shield Framework. By submitting your personal information to us you agree to this transfer, storing or processing at locations outside the EEA.

Under some circumstances we may be required to disclose or share your information without your consent, for example if we are required by the police, the courts or for other legal reasons.

How we keep your personal information up to date

The MS Society has a legal obligation under data protection legislation to keep the personal information it collects accurate and up to date. Among other things, it helps us ensure that we do not contact you with inappropriate information and marketing messages and also prevents us from wasting valuable funds on print and postage. We keep your information accurate as follows:

  • by giving you the opportunity at any time to contact us to correct or change your information.
  • by screening your name and postal address information against Royal Mail’s National Change of Address File: where you have given your permission to Royal Mail, we can either update our records with your new address or note you have moved so we don’t send anything to your old address.
  • by using information publicly available to us.
  • if you contact our Supporter Care team we may ask you to confirm certain details.
  • when we receive undelivered mail or email.

How we keep your personal information safe

We take our obligations to keep your personal data safe and secure very seriously.

Within the MS Society, access to your personal information is strictly controlled on a ‘need to know’ basis. Staff members and our nominated volunteers are only allowed access to your personal data if they have been sufficiently trained in data handling. We have specific technical controls in place to restrict access and these are monitored regularly. Our website is also monitored and protected to prevent it from unauthorised access.

All personal data sent to our trusted suppliers is encrypted. In all cases we require these companies to comply strictly with our instructions and they are not allowed to use your information for their own business purposes. We also require these companies to have sufficient organisational and technical measures in place to ensure the security of your data.

How long we keep your personal information

We keep your personal information in line with our data retention policy.

In certain circumstances we have a statutory obligation to keep your personal information for a set period of time (normally six-seven years) and this mainly concerns financial information regarding your donations or Gift Aid contributions.

How you can find out about the information we hold about you

You have the right to request a copy of the information that we hold about you.

If you would like a copy of some or all of your personal information, please email or write to us using the contact details in this policy – we do not apply a charge for providing you with this information.

If we do hold information about you we will:

  • give you a description of it.
  • tell you why we are holding it.
  • tell you who it could be shared with.
  • let you have a concise and clear copy of the information.

We want to make sure that your personal information is accurate and up to date and we will be happy to correct or remove information you think is inaccurate.

What to do if you have a complaint

If you have a complaint please contact our Data Protection Officer by:

If you are not satisfied with the way your complaint was handled, you can refer your complaint to UK Information Commissioner’s Office at

Links to other websites

We link our website directly to other sites, including sites that provide information, services, resources and fundraising opportunities that are not directly associated with us. This privacy notice does not cover the links within our site linking to other websites and organisations. We encourage you to read the privacy statements on the other websites you visit.

Changes to this privacy notice

This Privacy Notice was drafted with brevity and clarity in mind. It does not provide exhaustive detail of all aspects of the MS Society’s collection and use of personal information. However, we are happy to provide any additional information or explanation needed using the contact details in this policy.

We keep our privacy notice under regular review. This privacy notice was last updated on: 16 Feb 2018.

Contact us

If you have any questions, please email us at

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