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ZNM- Zusammen Stark! e. V.


Address

Käte-Hamburger-Weg 8
70569 Stuttgart Germany

Email Address

holfischer@posteo.de

Description

Centronuclear Myopathy is an umbrella term for several very rare, congenital muscle conditions. They have in common that the nuclei of the muscle fibers are located in their centers (centronuclear) and not as usual at the edges. The symptoms of the various centronuclar myopathies are relatively similar. Often the patients are too weak to walk, need respiratory aids and have to be fed via feeding tubes.

The most common and severe centronuclear myopathy is caused by a mutation on the MTM1-gene: Myotubular Myopathy. Other CNM are caused by mutations on the genes DNM 2, RYR1, BIN or TTN. As CNM are so rare conditions hardly any public funding for research on a cure exists and no registered association in Germany represented the patients and their families.

Our objectives are:

Giving families a voice!
Sharing information about CNM and the latest Research!
Sponsor grants for research on a cure!
Networking with other organizations!

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