The information found on these pages has been gathered as areas of possible interest. The Information Point has no responsibility over the content of the information featured on these websites.
Condition specific websites
UK and Europe
- Joshua Frase Foundation
- MTM-CNM Family Connection
- Myotubular Myopathy Resource Group
- Where There’s a Will There’s a Cure
Condition specific resources
The Muscular Dystropy Campaign have produced a factsheet about centronuclear and myotubular myopathy.
The American Society of Gene and Cell Therapy have produced a set of infographics and a short film describing what x-linked myotubular myopathy is and how gene therapy works.
An A-Z of terminology can be found on the Myotubular Trust website.
There are many organisations that provide services and support for those affected by disability, some of which are listed on the advice and support page of this website.