Privacy policy and cookies


At Muscular Dystrophy UK, we take your privacy very seriously and are committed to protecting your personal information. We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect.

This privacy policy explains how we may collect and use the information you give us.

Personal information about our supporter is essential to developing a better understanding of them so we can make better decisions, fundraise more efficiently and, be more efficient in our fight of muscle-wasting conditions.

Service information we provide includes updates about your condition; research information on treatment and clinical trials; opportunity to take part in patient days and to attend our national and Scottish conferences; and information about the help and support that may be available and how to make the best use of it. Occasionally, we might invite you to participate in surveys to better understand the needs of people with muscle-wasting conditions.

Our marketing communications include information about muscle-wasting conditions, news about progress in research, updates on campaigns and opportunities to get involved in the fight against muscle-wasting conditions. If you would like to receive such communications, please contact us on 0300 012 0172 or


Where we collect information

We collect personal information in a number of ways.

When you give it to us directly: you may give us your information when you request specific information, in order to sign up for one of our events, make a donation, purchase our products, or when you communicate with us. We may work with a provider which will collect this information on our behalf, but please be assured we are still responsible for your data.

When you give us information indirectly: your information may be shared with us by independent event organisers, for example the London Marathon or fundraising sites like Just Giving or Virgin Money Giving. They will only do so if you provide your consent to be contacted by MDUK. These organisations will have their own privacy policy and/or privacy statements, so please do ensure you understand this when providing your data.

When your information is available from other public sources: we may combine information you provide to us with information available from external sources in order to gain a better understanding of our supporters to improve our fundraising methods, products and services.
You may have provided permission for other organisations to share your data with third parties, including charities. This could be when you buy a product or service, register for an online competition or sign up with a comparison site.
Based on your settings or the privacy policies for social media and messaging services like Facebook. LinkedIn and Twitter, you might give us permission to access information from those accounts or services.
Information available publicly may include information found in places such as Companies House and information that has been published in articles/ newspapers.

When you are using our website: Like most websites, we use “cookies” to help us make our site better and easier to use. Cookies mean that a website will remember you. They’re small text files that sites transfer to your computer (or phone or tablet). They make interacting with a website faster and easier – for example by automatically filling your name and address in text fields. There are more details in our Cookie Policy.
The device you’re using to access our website may provide us with information about what type of device it is, what operating system it uses. Your device manufacturer or operating system provider will have more details about what information your device makes available to us.


What information we collect

The type and quantity of information we collect and how we use it depends on why you are providing it.

If you support us, for example by making a donation, volunteering, registering to fundraise, signing up for an event or campaigning for us, we may collect where relevant:

  • Your name
  • Your contact details (full address, email address and phone number)
  • Your date of birth
  • Your bank or credit card details
  • Information relating to your health (for example if you are taking part in a high risk event)
  • Why you have decided to donate to us

Where it is appropriate, we may ask if you have an interest in a specific muscle-wasting condition and what your link to this condition is.

Occasionally, we may ask and record the ethnic group you belong to.

We may also ask you for the name of your employer.


How we use your info

We will mainly use your data to:

  • Provide you with the services, products or information you asked for
  • Provide you with information about your muscle-wasting condition
  • Administer your donation or support your fundraising, including processing gift aid
  • Keep a record of your relationship with us
  • Ensure we know how you prefer to be contacted
  • Understand how we can improve our services, products or information.

If you would like to contact us about your marketing preferences, our Supporter Care team will be happy to answer any queries you may have.
Please write to us at Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU, email or call 0300 012 0172.

Building profiles of supporters and targeting communications
We may look at how you have previously interacted with us to guide us on how you like to interact with us and the kind of support that you have a preference providing.
We may analyse your personal information to create a profile about you, your interests and preferences. In doing this, we look for other information about you in addition to what you have given us, for example, from public records or social media.
This helps us make sure we send appropriate communications to our supporters, using our resources more effectively as well as helping us to improve the quality of our supporters’ experience with us.

Asking for support
Occasionally we may contact you to let you know about campaigns we are running or to ask for donations or other support. If you don’t want to hear from us, that’s fine. Our forms have clear marketing preference questions and we include information on how to opt out every time we get in touch. Just let us know when you provide your data or contact or call us on 0300 012 0172. Please get in touch if you have any questions or concerns.
We do not share personal details to third parties for the purposes of marketing.

Some employers also provide charitable support and we may also ask to approach them on our behalf.

Muscle-wasting conditions care and information services
We need your details, including your condition or your link to a condition, to provide you with services, respond to your queries, or provide you with information relevant to your condition.
We use some of the information you provided, including age, gender, or the muscle-wasting condition you have a link to send you relevant opportunities to get involved. We will use this information to make sure the views we hear are representative of all people affected by muscle-wasting conditions.
Ethnic identity is occasionally collected because we want to make sure that our organisation responds to the need of all communities. This information is only visible to the members of staff tasked with measuring our impacts in minority communities and developing peer networks.
Medical, personal, financial information you give to our Advocacy services includes is not kept with the main database and is only available to the team in charge of this work.
When logging to our online forum Talk MD, you will be sent an email to login and invited to create a user name. We advise you to use a name that does not allow to identify you and make sure you don’t post information that you don’t want to be on the public domain. Posts to the forum are anonymous but may to contain sensitive information. We advise users to be careful not to post information which would allow them to be identified.

Many of you are supporting the fight against muscle-wasting conditions through your volunteering. Some sit on committees or organise fundraising events. We will record your details and contact you to send you information relevant to your chosen voluntary activity.
Some people choose to tell us about their experiences of a muscle-wasting condition to help raise awareness or funds. This may include them sharing sensitive information related to their health and family life in addition to their biographical and contact information.
If we have the explicit and informed consent of the individuals, or their parent or guardian if they are under 18, this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report.

Children’s data
We collect and manage information from or about children. Information is usually provided to us by a parent enquiring about their child’s muscle-wasting condition; when children attend our events or fundraise for us.
All children under the age of 16 are excluded from our communications. Over 16 may receive information about muscle-wasting conditions or how to support the charity. They may also be included into our young activist network Trailblazers.
Under-18 are excluded from receiving any information about our raffles and lotteries.


How we keep your info safe

We place great importance on the security of your personal information and will always try to take appropriate precautions to protect it.

We ensure that there are appropriate technical controls in place to protect your personal details. For example our servers and network are protected and routinely monitored.

We always ensure only authorised personnel (staff, volunteers or contractors) have access to your information, and that they are appropriately trained to manage your data.

We do use external organisations that collect and/or process personal data on our behalf. Before working with these companies we perform rigorous checks to ensure they meet all relevant regulations and legislation.

We always implement a contract with our suppliers, which imposes robust data protection requirements, including the provisions of this policy, and seeks to provide maximum protection of your personal details.

We use external companies to collect or process personal data on our behalf, for e.g. printing and mailing large volume of letters. We do comprehensive checks on these companies to ensure they meet all relevant regulations and legislation. We always implement a contract which imposes robust data protection requirements and seeks to provide maximum protection of your personal details.

Some of our suppliers run their operations outside the European Economic Area (EEA), which might lead to your personal information being transferred, processed and stored outside the EEA. Although they may not be subject to same data protection laws as companies based in the UK, we will take steps to make sure they provide an adequate level of protection in accordance with UK data protection law, such as entering into the European Commission approved standard contractual clauses. By submitting your personal information to us you agree to this transfer, storing or processing at a location outside the EEA.

We may legally be required to disclose your details if required to by the police or for regulatory reasons. We will only ever share your data in other circumstances if we have your consent to do so.
We will only ever share your data in other circumstances if we have your explicit and informed consent.


How we keep your info up to date

Where possible, we try to keep your records up to date; for example, using the Post Office’s National Change of Address database. However, we really appreciate it if you let us know if your contact details change.

Your rights to your information

You retain control of your data and you have the right to ask us to stop processing your personal information, which we will do if it’s not necessary for the purpose you provided it to us for (e.g. processing your donation or registering you for an event). In some circumstances, we may legally be required to retain your personal information for audit purposes. This will be discussed with you depending on your requirements. Please contact or call us on 0300 012 0172 if you have any questions or concerns.

You also have the right to ask for a copy of the information we hold about you. If you want to access your information, send a description of the information you want to see and proof of your identity to Jacqueline Gaffin, HR Manager, Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU.

For further information see the Information Commissioner’s guidance. If you would like to make a complaint about how we process your personal data, please contact our Supporter Care team by email at, by phone 0300 012 0172 or by writing to Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU.
If you are not happy with how your complaint is dealt with, you should contact the Information Commissioner’s Office. Alternatively, you are entitled to make a complaint to the Information Commissioner’s Office without first referring your complaint to us.


Changes to this policy

This policy may change from time to time. If we make any significant changes in the way we treat your personal information, we will publicise these changes clearly on our website or contact you directly with more information.

Please note that this privacy policy will be updated to reflect the requirements of the General Data Protection Regulation, which is expected to become law in the UK on 25 May 2018.

If you have any questions, comments or suggestions, please let us know by contacting the please contact our Supporter Care team by email at, by phone 0300 012 0172 or by writing to Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU.

Keep in touch