Our Association

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We are the new association for  myotubular and other centronuclear myopathies

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.

IMG_0936The 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. More information you can  find  here.

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.

Therefore, our our objectives are:

  • Giving families a voice!
  • Sharing information about CNM and the latest Research!


Do you want to support us?

We would be very happy for your donation! You would help us even more if you could support us regularly as a sustaining member.

Our charta (Satzung) complies with the requirements of the  Finanzamt Stuttgart (§§ 51, 59, 60 and 61  Abgabenordnung). This means our association is a registered charity and your donations and membership fees are tax deductible in Germany.