Congenital muscular dystrophy
- If you would like to receive a printed copy of the CMD Guide for Families, please contact your local office, or call 1-866-687-2538 or email info(at)muscle.ca
The Management of Congenital Muscular Dystrophy: A Guide for Families (51 pages)
The Family Guide summarized the international standards of care for the management of congenital muscular dystrophy (CMD). The original consensus document was published in the Journal of Child Neurology in 2010.
The Family Guide contains important information regarding:
- Care at Diagnosis, Ongoing and Hospital Stays
- Neurologic Management
- Respiratory Management
- Gastrointestinal Management Cardiac Management
- Orthopedics and Rehabilitation Management
- Palliative Care: Individual and Family Emotional Well-being
- Definition of Subtypes of CMD
- Definition of Experts Providing Specialty Care
- Glossary of Terminology
- Diagnostic Tools
Acknowledgements: This guide for families was made possible by the vision of Anne Rutkowski, MD, Chair of Cure CMD, and was adapted, compiled, and edited by Susan Sklaroff-Van Hook and Diane Smith-Hoban. Muscular Dystrophy Canada is grateful to Cure CMD for their leadership, and for providing us permission to reproduce and adapt the content for Canadian audiences.
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.
Congenital muscular dystrophy (2 pages)
This document is intended for general information and awareness.
