Other organizations

Network of doctors and therapists

IMG_0893– The Myotubular Trust is a foundation from the UK, bringing  awareness to MTM and raising money to Support research for treating MTM . Therefore the Myotubular Trust holds a Family Conference every three years.The last one, taking place in 2014 inspired us to organize a similar conference in Germany.



– The Joshua Frase Foundation offers a great range of information for affected individuals and theier families, doctors and therapists



– The “Family Guide to Myotubular Myopathy” is a helpful guidline for those new to MTM/CNM




MTMX-Logo– “MTMX” is a network for families with children with myotubular myopathy




The “MTM – CNM Family Connection” holds the bianual Family Conference in the US. The next conference will be July 24th-26th 2015 in Chicago.



IMG_0892“The Information Point for Centronuclear and  Myotubular Myopathy” offers helpfull information for CNM



“Where there´s a Will there´s a Cure” gives information about MTM and raises money for research programs



The “RYR1 Foundation” is there to bring awareness to RYR1 related CNM, supporting families and Research

Here you can find further information about the goals and achievements  of the RYR 1 Foundation.









Global Genes” is an organisation dedicated to people with rare diseases


IMG_0902– The German Society for Muscular Diseases

http://www.rehakids.de – Rehakids is a great discussion forum parents with handicapped children

sp_logo – “Stiftung Noah” is a Foundation that offers helpfull Information on intensive care of kids (also in english)


ff – “Tracheostomakinder”  is a german discussion forum for parents with trached/vent-dependent children.