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 includes event invitations, campaign alerts, survey requests, patient support resources, or where our work is relevant to yours. 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 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 fundraise 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 send patient support resources
  • 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 this is required or authorised by law

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. 

This profile also 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.

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 [email protected]

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,  Unit G20, Shepherd’s Building, Charecroft Way, Hammersmith, W14 0EE

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.