Here are some places to find more information:
Sarah Foye, Titin Family Advocate
Facebook: Titin Related Muscle and Heart Disorders Community https://www.facebook.com/TitinRelatedCentronuclearMyopathy
The Congenital Muscle Disease International Registry
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 https://www.znm-zusammenstark.org/en