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ZNM - zusammen stark! e. V.

managed by H. Fischer

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 www.znm-zusammenstark.org and on facebook: https://www.facebook.com/znmstark

Latest project news

Bericht von der Familienkonferenz

  H. Fischer  18 August 2019 at 11:34 AM

Jetzt haben wir unseren Bericht von der Familienkonferenz, zusammen mit den Vorträgen und vielen Bildern und einem Kurzfilm auf unserer Homepage online gestellt! Diese schöne Veranstaltung wäre ohne eure Spendengelder nicht möglich gewesen! Vielen Dank dafür!
Auch nächstes Jahr veranstalten wir wieder eine Familienkonferenz, diesmal wieder interantional zusammen mit usneren Partnerorganisationen aus Großbritannien, Spanien, Italien, Polen und den USA. Wir freuen uns  wenn wir dafür weiterhin Unterstützung erfahren!
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Contact

Käte-Hamburger-Weg 8
70569
Stuttgart
Germany

H. Fischer

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