– 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
The “MTM – CNM Family Connection” holds the bianual Family Conference in the US. The next conference will be July 24th-26th 2015 in Chicago.
“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
http://www.rehakids.de – Rehakids is a great discussion forum parents with handicapped children