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Congenital Muscular Dystrophy

What is congenital muscular dystrophy?

Congenital muscular dystrophy (CMD) is the name for a group of muscular dystrophies that are united by the fact that muscle weakness begins in infancy or in early childhood (typically before age 2). Sometimes, the condition is not detected until a child is found to have trouble with certain developmental milestones — such as learning to walk. Both boys and girls can develop CMD. There are several different types of CMD, which have different symptoms, degrees of severity, and rates of progression.

 

Fact Sheet on Congenital Muscular Dystrophy

 

Publications

Consensus Statement on Standard of Care for Congenital Muscular Dystrophies
Consensus Statement on Standard of Care for Congenital Muscular Dystrophies (22 pages)

Published in the Journal of Child Neurology.
Ching H Wang, et al.
2010;25 (12):1559–1581.
Published online 15 Nov 2010

Download The Management of Congenital Muscular Dystrophy: A Guide for Families
The Management of Congenital Muscular Dystrophy: A Guide for Families (52 Pages)

This document provides families with plain language description of the standards of care for patients with CMD, including respiratory, neurological, gastrointestinal, cardiac, and orthopedic management.

 

If you would like to receive a printed copy, please contact your local office, or call 1-866-687-2538 or email info(at)muscle.ca

 

Evaluation, Diagnosis, and Management of Congenital Muscular Dystrophy

Summary of Evidence-based Guideline for Clinicians

Congenital Muscular Dystrophy

Summary of Evidence-based Guideline for Patients and their Families

 

Useful links

Congenital Muscle Disease International Registry (CMDIR)

Welcomes everyone with congenital or later onset muscle weakness (such as limb girdle muscular dystrophy) to participate. This registry was created to identify the global congenital muscle disease population for the purpose of raising awareness, standards of care, clinical trials and in the future a treatment or cure. The CMDIR website also provides information about clinical trials, medical providers with expertise in diagnosis and treatment and list of institutions that perform genetic testing.

Cure CMD

Cure CMD is a US-based health charity with comprehensive online resources and information for patients and families.

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