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.

 

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

 

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– 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

 

 

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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

 

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

 

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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.

 

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Unbenannt

 

 

 

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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.