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ZNM - zusammen stark! e. V.

managed by H. Fischer (Communication)

About us

We are the German association of myotubular myopathy (MTM) and other centronuclear myopathies (CNM).

CNM are very rare congenital muscle conditions. Often the patients are too weak to walk. Sometime they need respiratory aids and have to be fed by a feeding tube. Especially for those with MTM their life expectancy is terribly low (less than 10 years). As these conditions are so rare hardly any public funding is spend in the research for a cure of CNM and before CNM - together strong no association in Germany represented the affected families.

Our goal is to
1) Give the families a voice
2) Share information about CNM, and
3) Support research to find a treatment or a cure for CNM.

More information on our association you can find on our website and on facebook:

Latest project news

Newsletter zur Familienkonferenz

  H. Fischer  21 April 2019 at 07:21 PM

Liebe Spenderinnen und Spender,

in drei Wochen findet unsere Familienkonferenz in Hohenroda statt. Dazu haben wir einen Newsletter verfasst. Er kann hier heruntergeladen werden.

Die Familienkonferenz kostet viel Geld. Deswegen freuen wir uns, wenn ihr uns dabei weiter unterstützt! Vielen Dank!

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H. Fischer

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