What this privacy policy covers

Duchenne UK (‘DUK’) is committed to protecting your personal information. This policy explains how DUK collects and uses the personal information you provide to us, whether online, via phone, email, in letters or in any other correspondence. Below we set out:

  • Who we are;
  • What is personal information;
  • What information DUK may collect about you;
  • How we will use that information;
  • How we keep your information secure;
  • How long we keep your information;
  • Whether we disclose your details to anyone else;
  • Your rights regarding the information you provide to us.

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.

What is personal information

Personal information is any information which tell us something about you. This includes your name, contact details and any other information which would allow us to identify you.

Under data protection legislation, certain personal information 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”. Any collection and use by us of this type of information is not permitted without further justification.

The information we collect

We collect personal information 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 or otherwise provide us with personal information. Such information includes, for example, your name, postal address, email address, telephone number, IP address, credit/debit card details and whether you are a tax payer so that we can claim Gift Aid.

Sensitive personal information

We collect sensitive information about the health of participants in certain events we stage and in particular the Duchenne Dash, our headline annual fundraising event, which takes the form of a long-distance bike ride from London to Paris.  So as to help to ensure that Duchenne Dash participants are able to cope with the rigours of the ride, we collect certain health information about these individuals.  We use that information, in particular, to enable us to provide the participants with support and facilities throughout the event.  We always ask for your consent when we collect this 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 information 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.

Fund raising platforms

If you decide to support us by setting up a page on a fund-raising platform such as Just Giving or Virgin Money Giving this will involve you agreeing to share with certain personal data about you.  However, we will not receive personal information individuals who make donations to us via such fund-raising platforms unless they have consented to us directly sending them marketing information.  We will become joint data controllers of such personal data as you may provide to such fund-raising platforms and therefore we may contact you directly about your fund-raising efforts.

How do we use your information?

We usually process your information or data because you have consented to this. We may also process that information when we have a legitimate interest in so doing but any such legitimate interest does not override your rights in respect of this information. Examples of what we consider to be legitimate interests in this regard include providing you with information about our research, appeals, newsletters, events, campaigns, surveys, feedback and other activities. On occasion, we may also share such information with other third parties whom we have selected to provide services in support of our overall activities.

We also process your information for a variety of purposes including the following:

  • To provide you with information about our work and activities;
  • To provide you with updates on the progress of research which we are funding;
  • To process donations we may receive from you;
  • To fund-raise in accordance with our internal policies and procedures;
  • 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;
  • For internal record-keeping purposes, including addressing any feedback or complaints in respect of our activities;
  • To ask you to participate in surveys or research;
  • To help us to ensure as best we can the safety of participants in our events;
  • To use IP addresses to identify your approximate location and to record website traffic;
  • 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; 
  • Where we have collected information about you, we may use that information to create an individual profile which records your interests and preferences and so as to assist us in doing all we can to ensure that any contact with you is not only appropriate but also that it contains relevant information; and
  • Where this is required or authorised by law.

Marketing materials

We may contact you by email for marketing purposes if you have agreed to this.  If that is the case then you may opt out of receiving further marketing information 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 in this regard. 

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 ([email protected]) or by writing to us at the following address: Duchenne UK, 11 Bedford Road, London W4 1JD

If you tell us that you do not consent to our use of your information for marketing purposes then we will not do so.  We will, however, retain limited details about you on a “suppression list” so as to help to ensure that we act in accordance with your wishes.

Where is your information 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. Whilst each member of our staff who is involved with processing your information is based in the UK, 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 European Economic Area.  We follow the Information Commissioner’s Office’s guidelines in our use of online IT systems.

Retention of your information

We will retain your personal information only for so long as may be necessary so as to achieve the purposes set out above and to comply with our obligations in respect of the collection and use of information including.

Information sharing and disclosure

  • DUK does not sell, trade, or rent your personal information to others.
  • 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 information with our service providers, associated organisations and agents if and to the extent that we consider this necessary for the purposes of our fund-raising 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 information in connection with the same.

The personal information about you held by us: your rights

You have the following rights in respect of personal information about you which is held by us:

  • Transparency about how we use your data (right to be informed).
  • You can request a copy of the information we hold about you, which will be provided within one month (right of access).
  • You can ask us to update or amend the information we hold about you if it is incorrect (right of rectification).
  • You can ask for a copy of your data in electronic form (right of portability).
  • You can ask us to stop using your information for marketing purposes (right to restrict processing).
  • You can ask us to remove your personal data from our records (right to be forgotten).

If you would like to exercise any of these rights please email: [email protected] or write to us at: Duchenne UK, 11 Bedford Road, London W4 1JD.

In the event that you are unhappy about how we have handled your request in respect of your personal information held by us and wish to make a complaint about this, please contact the Information Commissioner’s Office (email address: www.ico.org.uk; telephone number: 0303 123 1113).

Changes to our privacy policy

DUK keeps this Privacy Policy under regular review and any updates or amendments will be posted on our website.  This version of our Privacy Policy was most recently updated in May 2018.

How to contact us

If you have any questions about this Privacy Policy or our use of your information generally please do not hesitate to contact us:

  • by email: [email protected]
  • or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD.