UK Myotonic Dystrophy Patient Registry

We are delighted to have collaborated on this poster which was presented at the 16th Neuromuscular Translational Research Conference in March 2023.

Click her to view the poster as a full PDF.

Emma-Jayne Ashley (CureDM) and Helen Walker (UK DM patient registry)


UK Myotonic Dystrophy Patient Registry


CureDM is delighted to co-fund the registry, as we understand the importance of having accurate patient data, and the impact on day-to-day care for our cimmunity, as well as for upcoming potential trials, treatments and therapies.


Please follow THIS LINK and register yourself/your loved ones on the UK DM Registry.


There is lots of information on the page (link above) to explain what the registry is, why it is used and how it could benefit the community in future studies and trials.

Whilst we know there are many patients in the UK with DM, it is still believed to be a 'rare disease' and very little is known about it.

 Your help, by registering here, means that you will be counted, and it can be shown that we have a community of patients within the UK who deserve to be supported.