Our Registry is closing, with Duchenne UK having developed a more advanced registry in recent years, and we have a few questions on how we proceed with your information.
You can choose to have your information transferred across to the Duchenne UK Registry. We are awaiting information on what this looks like, but with your permission we can share your data with the Duchenne UK team to use on their Registry.
You can also choose for your data to be transferred to our support team, so wherever you are in your Duchenne journey, our team can support you. We have a growing team with staff living with Duchenne and experience from newly diagnosed families, periods of significant change, and end of life care and support too.
You can also ask that we delete your data entirely, not passing it on to Duchenne UK or moving to our support team. This information is your personal data, and the decision is yours.
Please let us know what you would like us to do with your personal information here.
To ensure we can continue to support you, if we don’t hear back from you by 20th April 2026, we will delete your data. Please know our support line is open Monday to Friday, 9am to 5pm, for help or a listening ear on this journey – 07535498506.
Support and Future Events
We are just about to commence our series of webinars on various topics around Duchenne and have in person events across the UK to bring our Duchenne community together – including our annual conference in the Autumn which is already shaping up nicely.
You can also hear about our events and activities through our newsletter, and if you don’t already receive this, you can sign up here.
