Titin Myopathy

All about Titin Protein, Titin Myopathy, Titinopathy, Titinopathies

Titin Myopathy - All about Titin Protein, Titin Myopathy, Titinopathy, Titinopathies

2018 Update: The Care of Congenital Myopathy: A Guide for Families

This is a wonderful resource for families to learn more about getting the best care in a wide range of clinical areas. Click below for a PDF version of this document.

2018 Family Guide

The Care of Congenital Myopathy: A Guide for Families is a comprehensive care guide developed for families and people with congenital myopathy (CM) in response to community requests for useful information.  This work began as a translation into more easily understood language from the Consensus Statement on Standard of Care for Congenital Myopathies medical document that was published in 2012 by Wang and colleagues in the Journal of Child Neurology.  As the guide for families took shape, it was apparent that the guidebook would include much more than basic medical information, since we had terrific input from the very people living with and caring for someone with CM.  The family guide became testimony to many of the challenges, joys, concerns, and triumphs that are typical for those living a not-so-typical life.  Our sincere appreciation goes out to everyone that contributed to what we hope will be an engaging, informative manual for families and individuals with CM.