Here are some places to find more information:

Sarah Foye, Titin Family Advocate

Recessive Titinopathy Fact Sheet for Families

The Muscular Dystrophy Association (MDA)

About ZNM – Zusammen Stark! e.V.

(CNM – Together Strong!) is a self-help association for myotubular myopathy and other centronuclear myopathies (CNM = ZNM). They represent 165 individuals from 63 families with a CNM in Germany, the Netherlands, and Austria. As a self-help organization, their main goal is to connect those affected and their families and to support each other in their daily lives. This is mainly done by a yearly family conference, webinars, and a closed Facebook support group. They also actively invest in research to find a treatment for these conditions. For more information please visit

Resource for Dilated Cardiomyopathy

The DCM Foundation has resources and information for people with the heart condition known as dilated cardiomyopathy. See here: