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
  • 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 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, including the Duchenne Dash.

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.

Fundraising 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.  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.