Privacy Policy

What this Privacy Policy covers
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This Privacy Policy explains how Duchenne UK (‘DUK’) collects and uses the personal data you provide to us, whether online, via phone, email, in letters or in any other correspondence or that we collect when you visit our website.
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Please see our separate Duchenne UK Connect Privacy Policy for information about how we process personal data in the context of Duchenne UK Connect.
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Below we set out:

Who we are
DUK is a registered charity which raises money to fund and accelerate treatments and a cure for Duchenne Muscular Dystrophy. Our registered charity number in England is: 1147094 and our registered data controller number is ZA546430. For the purposes of applicable data protection laws, DUK is the controller of personal data we process about you.

What is personal data
Personal data is any information which allows us to directly or indirectly identify you as an individual. This includes your name, contact details and any other information which would allow us to identify you.

Under applicable data protection laws, certain personal data which is more sensitive in nature, for example in respect of matters such as your health, ethnic or racial origin, religious beliefs or political opinions, is classified as “special category” personal data.

What Personal Data do we collect?

We collect personal data about you when you:

·       enquire about our activities

·       register with us for our newsletters

·       engage with our social media channels

·       fundraise for us

·       donate to us

·       register to attend one or our events

·       visit our website

·       participate in research or surveys

·       order patient support resources

·       conduct research which we are funding

·       are employed as part of a Duchenne UK grant

·       Or otherwise provide us with personal data

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Such information includes, for example, your name, postal address, email address, telephone number, IP address, credit/debit card details and whether you are a taxpayer so that we can claim Gift Aid.

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We may also collect personal data about you from other sources, including publicly available information. For example, we may collect geo-demographic information and measures of affluence. This information is taken from publicly available sources, for example, from public registers, such as listed Directorships, typical earnings in a geographical area, information from the electoral roll, press reports and social media posts.


Special Category Personal Data

We collect sensitive personal data about the health of participants in certain events we stage, including the Duchenne Dash.

We use that personal data, in particular, to enable us to provide the participants with support and facilities throughout the event. Our legal basis for processing such special category personal data is your explicit consent, and you have the right to withdraw such consent at any time. However, if you withdraw such consent, we may not be able to permit you to participate in the event.

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We always ask for your explicit consent when we collect special category personal data, and we clearly explain the purpose(s) for which that data is collected and how we will use it.  Where we use third parties to help us stage an event we may share this personal data with them, but only to the extent this is necessary in order to enable us to stage the event whilst taking the appropriate steps so as best to ensure the safety of participants.

Fundraising platforms
If you decide to support us by setting up a page on a fundraising platform such as Just Giving or Virgin Money Giving this will involve you agreeing to share certain personal data about you with such platforms. We will become joint data controllers of personal data as you may provide to such fundraising platforms and therefore we may contact you directly about your fundraising efforts.

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How do we use your personal data

We usually process your personal data because you have consented to this. We may also process that personal data when we have a legitimate interest in so doing but any such legitimate interest does not override your rights in respect of this personal data. Examples of what we consider to be legitimate interests includes event invitations, campaign alerts, survey requests, patient support resources, or where our work is relevant to yours.

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On occasion, we may also share such personal data with other third parties whom we have selected to provide services in support of our overall activities.

We process your personal data for the following purposes:

We may use your personal data to (What is the legal basis for processing your personal data in this way?)

- provide you with information about our work and activities (Where you have registered to receive information about our work and activities and have provided your consent to receive such information.)

- provide you with updates on the progress of research which we are funding (Where you have registered to receive information about the progress of research and have provided your consent to receive such information.)

- process donations we may receive from you (It is necessary for our legitimate interests as a charity to process donations we receive from you for the purposes of funding and accelerating treatments and a cure for Duchenne Muscular Dystrophy.)

- To fundraise in accordance with our internal policies and procedures (It is necessary for our legitimate interests as a charity to conduct fundraising activities for the purposes of funding and accelerating treatments and a cure for Duchenne Muscular Dystrophy.)

- For administration purposes. For example, we may contact you regarding a donation you have made or in connection with an event which you have registered to attend (It is necessary for our legitimate interests to contact you regarding donations you have made or in connection with an event you have registered to attend in order to process such donation or facilitate the relevant event you have registered for.)

- For internal record-keeping purposes, including addressing any feedback or complaints in respect of our activities (It is necessary for our legitimate interests to address feedback or complaints we receive, to assess and respond to such feedback or complaints.)

- To send patient support resources (If you have requested patient support resources, it is necessary for our legitimate interests to process your personal data in order to provide you with such resources.)

- To ask you to participate in surveys or research (It is necessary for our legitimate interests to process your personal data for the purposes of asking you to participate in surveys or research.)

- To help us to ensure as best we can the safety of participants in our events (Itis necessary for our legitimate interests to process your personal data in the context of our events in order to facilitate and run those events. It may also be necessary to process your personal data in the context of our events to comply with legal obligations which we are subject to.)

- To use IP addresses to identify your approximate location and to record website traffic (It is necessary for our legitimate interests to analyse website traffic so that we can improve our website.)

- To use cookies to personalise the manner in which our website presents information and services to you and for the purposes of analysing and improving such information and services and in particular so as to make our websites as user-friendly as possible (We will ask for your consent to the use of non-essential cookies on our website. For any strictly necessary cookies, it is in our legitimate interests to process your personal data for the purposes of facilitating your access to our website.)

- Where this is required or authorised by law and exercise or defend legal claims (Processing personal data may be necessary to ensure compliance with our legal obligations. It is in our legitimate interests to process personal data for the purposes of exercising and defending legal claims.)

- Through your engagement with us and the data you provide, we will create a profile of your interests and preferences to ensure our communications is always relevant. When building such a profile, we may make use of additional information about you, including geo-demographic information and measures of affluence. This information is taken from publicly available sources, for example, from public registers, such as listed Directorships, typical earnings in a geographical area, information from the electoral roll, press reports and social media posts. If you would like to change our use of your personal data in this manner, please get in touch with us on dataprotection@duchenneuk.org. (It is necessary to process personal data about you in such a profile to helps us understand your background so that we can make appropriate requests to those who may be willing and able to give more than they already do, enabling us to raise funds sooner and more cost-effectively for the purposes of funding and accelerating treatments and a cure for Duchenne Muscular Dystrophy.)

- Process your personal data where this is necessary to keep our website safe and secure (It is necessary for our legitimate interests to monitor how our website is used to detect and prevent fraud, other crimes and the misuse of our website. This helps us to ensure that you can safely use our website.)

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Marketing materials

We may contact you by email for marketing purposes if you have provided your consent to this. If that is the case, then you may opt out of receiving further marketing information and withdraw your consent to receive direct marketing from us at any time.

If you have provided us with your postal address or telephone number we may send you mail or telephone you about our work.  However, if you have told us that you would prefer not to receive such information then we will not contact you via mail or telephone.

It is your choice whether to agree to receive information about our work and the ways you can get involved. You may opt-out of marketing emails at any time by clicking the ‘unsubscribe’ link in our marketing emails.

At any time you may also amend any of your individual preferences in respect of our contact with you. If you do not consent to us contacting you by telephone or mail for marketing purposes, we invite you to tell us either by email (dataprotection@duchenneuk.org) or by writing to us at the following address: Duchenne UK, Unit G24, Shepherd’s Building, Charecroft Way, Hammersmith, W14 0EE

If you tell us that you do not consent to our use of your personal data for direct marketing purposes then we will not use your personal data for direct marketing purposes. We will, however, retain limited details about you on a “suppression list” so as to help to ensure that we no longer send direct marketing communications to you.

 

Where is your personal data and how do we keep it safe?
Our information is mainly hosted in what is commonly referred to as “the cloud”. Our hosting of that information uses various online IT systems specifically designed to protect the safety and confidentiality of your data via the use of encryption and other security measures.
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However, unfortunately the transmission of information via the internet is not completely secure. Although we have procedures and security measures in place to protect your personal data, we cannot guarantee the security of your data transmitted to us.
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Our use of the IT systems referred to above may involve the provision of services by individuals and/or companies whose registered place of business is located outside the United Kingdom or the European Economic Area. We will take steps that are reasonably necessary to ensure that your personal data is treated in accordance with applicable data protection laws, including, where relevant, entering into standard contractual clauses (or equivalent measures) with the party outside the United Kingdom or European Economic Area receiving the personal data. You can request further information regarding the agreements we have in place for this purpose by contacting us as set out below (please see “How to Contact Us”).

How long do we keep your personal data?
We will retain your personal data only for so long as is necessary to achieve the purposes for which the personal data is collected and processed.

How and why might your personal data be shared?

- We do not permit any cloud-based service used by us to process data which they host on our behalf for their own purposes.

- We only share your personal data with our service providers, associated organisations and agents if and to the extent that we consider this necessary for the purposes of our fundraising efforts and/or so as to enable us to stage events in the best possible manner which includes safeguarding the health and interests of the participants in such events.

- In an emergency situation and/or as required by law, we may disclose your personal data in connection with the same.

 

Your rights

You have the following rights regarding your personal data that we process:

  • - Right to be Informed: You have the right to be provided with information about how we use your personal data.
  • - Right of Access: You have the right to confirm with us whether your personal data is processed, and if it is, to request access to that personal data including the categories of personal data processed, the purpose of the processing and the recipients or categories of recipients. We do have to take into account the interests of others individuals, and if you want to request more than one copy we may charge a fee.
  • - Right of Rectification: You may have the right to rectify inaccurate or incomplete personal data concerning you. In particular, you have the right to have incomplete personal data completed.
  • - Right of Portability: You may have the right to receive personal data concerning you, which you have provided to us, in a structured, commonly used and machine-readable format and you may have the right to transmit that data to another entity.

- Right to Restriction of Processing: In limited circumstances, you may have the right to request that we restrict processing of your personal data.

  • - Right to Erasure: You may have the right to ask us to erase personal data concerning you.
  • - Right to Object: Where we process your personal data on the basis of our legitimate interests, under certain circumstances you have the right to object to the processing of your personal data, including profiling.
  • - Direct Marketing: You have the right to withdraw your consent for receiving direct marketing from us at any time. You can do this for example by clicking on the "unsubscribe" link in the email that we have sent to you, or by contacting us at the details below.
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If you would like to exercise any of these rights please email: dataprotection@duchenneuk.org, or to us at: Duchenne UK, Unit G24, Shepherd’s Building, Charecroft Way, Hammersmith, W14 0EE
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You also have the right to make a complaint to the competent data protection authority, which for the United Kingdom is the Information Commissioner’s Office. The Information Commissioner’s Office can be contacted here, by post at Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF, or by telephone 0303 123 1113.

 

Changes to our privacy policy

DUK may update this Privacy Policy from time to time. Any changes to this Privacy Policy will be posted on this page, and where appropriate, will be notified to you by email. This version of our Privacy Policy was most recently updated in October 2026.

How to contact us

If you have any questions about this Privacy Policy or our use of your personal data please do not hesitate to contact us:
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  • by email: dataprotection@duchenneuk.org;

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  • by writing to us at: Duchenne UK, Unit G24, Shepherd’s Building, Charecroft Way, Hammersmith, W14 0EE