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MTM Links and Information

This is a compilation of the best sites on the web for MTM information and Research updates.  If you have a website or article that you believe should be included, please email us and we will add it to this page!

​Joshua Frase Foundation​
The Frase family has been the driving force behind research for treatments.  They have raised significant funds and worked tirelessly for the benefit of all with this disease.

Myotubular Trust​​
Our European friends have been advancing ground breaking research through this wonderful organization.  They are funding research and providing critical information to CNM-MTM families.

The MTM - CNM Family Connection This group organizes the U.S. conference for our CNM-MTM families.  It is an amazing opportunity to meet other children, parents and researchers.  This conference is held every two years and is a rewarding and informational experience.

ZNM - Zusammen Stark e. V.

Our friends in Germany have started this association and are doing great work providing information to families and funding research for myotubular myopathy.

The Information Point Centronuclear and Myotubular Myopathy
This is another great information source.  Please view the Newsletters they publish online.  The newsletter continually provides the most up to date happening throughout the world.

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