Privacy Policy

At Myotubular Trust, we take the holding of personal data seriously.

This privacy policy explains how we may collect and use the information you give us. We hold data simply in order to communicate with you. We never pass your data onto third parties without express permission on a case by case basis. We use the information we do have to send newsletters updating you on fundraising and research news, or to invite you to events that may interest you as a patient, or as a supporter.


We collect personal information in a number of ways.

When you give it to us directly: when you request specific information; in order to sign up for one of our events; make a donation; purchase our wristbands, or when you communicate with us.

When you give us information indirectly: your information may be shared with us by independent event organisers, for example the London Marathon, or fundraising sites like BT MyDonate, JustGiving or Virgin Money Giving. It will also be shared with us by Charities Aid Foundation when you make an online donation via our website. These organisations will only share your data if you provide your consent to be contacted by Myotubular Trust. These organisations will have their own privacy policy and/or privacy statements, so please do ensure you understand this when providing your data.

We do not collect data from any other third party organisations, social media or messaging services, nor do we gather information from cookies on our website to tailor information or advertising to you.



  • Provide those with myotubular or centronuclear myopathy with updates on their condition
  • Share updates on research – treatment, clinical trials, patient days and relevant events
  • Provide information about Family Conferences that are specific to myotubular and centronuclear myopathy
  • Share information about the help and support that may be available
  • Inform you of fundraising events
  • Invite you to participate in occasional surveys to gain a better understanding of the needs of patients and their families
  • Administer donations, including processing gift aid
  • Keep a record of your relationship with us
  • Ensure we know how you prefer to be contacted.

Please note, we use a service called MailChimp to send our e-mails and we’ll never sell your information to anyone. We will not pass your data on to anyone else without your express permission.

At any point, please contact us if you would like us to delete all the data we hold about you –

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