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The Myotonic Dystrophy Foundation have published these amazing resources. We have some in the Cure DM shop, to share with your clinicians and loved ones.
We have full copies of the Care Recommendations, Quick Reference Guides for DM1, DM2 and Congenital DM.
Please send me an email on emma@cmmd.uk for more info, or contact the MDF who are also very happy to send them out to you.
This is the First EVER clinical care recommendations for adults living with Myotonic Dystrophy type 1, developed by 66 International Clinicians, all experienced in DM1 Patient care. There is a full document and a 4-page Quick Reference Guide.
RECENTLY PUBLISHED: DM1 Consensus-based Care Recommendations
You can see the Full version by Clicking here.
You can see the Quick Reference Guide here.
You can see the publication here.
RECENTLY PUBLISHED: DM2 Consensus-based Care Recommendations
You can see the Full version by Clicking here.
You can see the Quick Reference Guide here.
RECENTLY PUBLISHED: Consensus-based Care Recommendations for Congenital DM
You can see the Full version by Clicking here.
You can see the Quick Reference Guide here.
Please print these and take them to your doctors and caregivers as the new standards of care we expect for the condition. Alternatively - email us on emma@cmmd.uk or contact the MDF via their website. https://www.myotonic.org.
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."
