Skip to content

Privacy Policy

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. We work with your personal information so we can develop a better understanding of you and then make better marketing and service decisions, fundraise more effectively, and be more efficient in our fight of muscle wasting conditions.

Service information we provide includes information about your condition; research information on treatments and clinical trials; opportunities to take part in patient information days, virtual seminars, and our national and Scottish conferences; and information about the help and support available and how to make the best use of it. Occasionally, we might invite you to take part in surveys to help us 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, opportunities to fundraise, and ways to get involved in the fight against muscle wasting conditions. If you would like us to send you such communications, please let us know 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, sign up for one of our events, make a donation, buy any of our products online, or when you communicate with us. We may work with a provider who will collect this information on our behalf, but please be assured we are still responsible for your data.

When you give us information indirectly: third parties, such as independent event organisers may share your information with us. These could be, for example, the London Marathon or fundraising sites like JustGiving, Virgin Money Giving, or Much Loved. They will only share your information with us if you’ve consented for MDUK to contact you. These organisations will have their own privacy policy and/or privacy statements, so please check and make sure you understand this when sharing your information.

When your information is available from other public sources: we may combine information you give us with other information available from external sources, so that we can gain a better understanding of you, and improve our fundraising methods, products and services.

You may have given permission for other organisations to share your data with third parties, including charities. This could have been when you bought a product or service, registered for an online competition or signed up with a comparison site. Based on your settings, or the privacy policies for social media and messaging services like Facebook, Instagram, LinkedIn and Twitter, you might give us permission to access information from those accounts or services.

Information that is available publicly may include that found in places such as Companies House, the Charity Commission Register, and in published articles/newspapers.

When you are using our website: as with most websites, we use “cookies” to help us make our site faster and easier for you to use. Cookies help a website to remember you. They’re small text files that sites transfer to your computer, phone or tablet. So, for example, it might automatically fill your name and address in text fields. You can read more in our Cookie policy.

The device you use to visit our website may share with us information about what type of device it is, and what operating system it uses. Your device manufacturer or operating system 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 giving it to us.

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 the following information, 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 appropriate, we may ask if you have an interest in a specific muscle wasting condition and, if so, what your link to this condition is.

Occasionally, we may ask and record which ethnic group you belong to. We may also ask you for the name of your employer, or your emergency contact information for event participation.

How we use your info

We will 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 and sending you event information
keep a record of your relationship with us
make sure we know how you prefer to be contacted
understand how we can improve our services, products or information
email you about other opportunities to support us, and get involved with our activities and events.
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, 32 Ufford Street, London SE1 8QD, email or call 0300 012 0172.

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 give you information relevant to your condition.

We use some of the information you give us, including your age, gender, or the muscle wasting condition you have a link to, to let you know about relevant opportunities to get involved. We will use this information to build our own picture that represents the views of all people in our community who have muscle wasting conditions.

We will sometimes collect information about your ethnicity, to make sure we respond to the need of all of our communities. We share this information only with members of staff tasked with measuring our impact in minority communities, or with developing peer networks.

We don’t keep any medical, personal, or financial information you give to our Advocacy team with the main database; this information is only available to the team in charge of this work.

When you log in to our online forum, TalkMD, you’ll get a log-in email, with an invitation to create a user name. We advise you use a name that does not allow people to identify you, and make sure you don’t post information on the forum that you don’t want to be in the public domain. Posts to the forum are anonymous, but may to contain sensitive information. We advise users to be careful not to post any identifying information.

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 on them, and we include information on how to opt out every time we get in touch. Just let us know when you fill in the form, or contact us at or 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 ask you to approach them on our behalf.

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’re happy to offer.

We may analyse your personal information to create a profile about you, your interests and preferences. In doing this, we may look elsewhere for information about you in addition to what you have given us, for example, from public records or social media.

On digital advertising platforms such as Google AdWords and social media platforms, we may use the data you have given us to share adverts with you, or with potential supporters who have similar characteristics to yours, using tools such as lookalike and custom audiences. Where you have asked us not to use your information for targeted digital advertising, you may still see adverts related to us. This is because the social media site or advertising network may select you based on information they hold, such as your age and location, or websites you have visited; this would not be from information we’ve given. We may also use information provided by pixels, designed by individual digital and social media platforms to track your actions, so that we can create a better understanding of how to communicate with you.

Sites we do this on or may do this on, include: Google (AdWords and additional platforms), Facebook, Instagram, LinkedIn, Twitter, and YouTube. You can find the respective audience targeting policies on each individual platform.

This kind of targeting helps us make sure we send appropriate communications to our supporters, using our resources more effectively to help us improve the quality of our supporters’ experience with us.


Many of you are supporting the fight against muscle wasting conditions by volunteering. Some of you 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 living with a muscle wasting condition to help raise awareness or funds. This may include sharing sensitive information related to their health and family life, in addition to 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, we may make this information public at events, in materials promoting our campaigning, advocacy and support, and fundraising work, or in documents such as our annual report.

Children’s data

We collect and manage information from or about children. A parent enquiring about their child’s muscle wasting condition usually gives us this information when children attend our events or fundraise for us.
All children under the age of 16 are excluded from our communications. Over-16s may receive information about muscle wasting conditions or how to support the charity. Under-18s 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 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 get appropriate training in how 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 enter into a contract with our suppliers that imposes robust data protection requirements, including the provisions of this policy, and that seeks to provide maximum protection of your personal details.

External companies that, for example, print and mail large volumes of letters, collect or process personal data on our behalf. Again, we do comprehensive checks on these companies, and enter into a contract with them, to ensure they meet all relevant regulations and legislation.

Some of our suppliers run their operations from outside the UK, inside and outside of the European Economic Area (EEA), which might lead to your personal information being transferred, processed and stored in other countries. 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. By submitting your personal information to us, you agree to this transfer, storing or processing at a location outside the UK.

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 explicit and informed consent to do so.

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 info

You retain control of your information and you have the right to ask us to stop processing your personal information, and we will do this if it’s not necessary for the purpose you gave it to us for (for example, 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. We will discuss this 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: HR Manager, Muscular Dystrophy UK, 32 Ufford Street, London SE1 8QD.

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, 32 Ufford Street, London SE1 8QD.

If you are not happy with how we deal with your complaint, you should contact the Information Commissioner’s Office. You are also 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 we’ll contact you directly with more information.

If you have any questions, comments or suggestions, please let us know by contacting our Supporter Care team by email at, by phone 0300 012 0172 or by writing to Muscular Dystrophy UK, 32 Ufford Street, London SE1 8QD.

We’re here to support you

Our support services

Webinars, Information Days, and support groups for our muscle wasting community. Our life-changing support is here for you.

Call our helpline

Advice for living with or caring for someone with a muscle wasting condition.

Stay connected with our community

Get the latest news, inspiring stories, upcoming events, and valuable support services delivered straight to your inbox.