!
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.
Disclaimer:
"This site is owned and operated by CureDM, which is a registered charity. Nothing contained in this site is or should be considered, or used as a substitute for medical advice, diagnosis or treatment. The site owners and administrators cannot accept any legal or personal liability for the outcomes of actions taken by you in using this information. This site and its information do not constitute the practice of any medical, nursing, registered dietitian or nutritionist, or other professional health care advice, diagnosis or treatment.
All items and articles are written by individual authors. The opinions expressed are entirely the authors' own, except where clearly indicated. We strongly advise you to speak with a medical professional about all aspects of the condition."
