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UK Myotonic Dystrophy Patient Registry

Thank you to Ben Porter of the UK DM Registry for allowing us to share this excellent information.

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UK Patient Registry

There is lots of information on the page 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 int he 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 ill be counted, and it can be shown that we have a community of patients within the UK who deserve to be supported.

"If you are a patient affected by Myotonic Dystrophy type 1 and register here, we can direct you to clinical trials and research results (such as new treatments) that might be of specific interest to you. In addition, by registering you are helping researchers obtain precise data about the prevalence of Myotonic Dystrophy, which could be of benefit to all affected patients."

(DM Registry)