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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.
The most common and severe centronuclear myopathy is caused by a mutation on the MTM1-gene: Myotubular Myopathy.
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!
- Sponsor grants for research on a cure!
- Networking with other organizations!
Do you want to support us?
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.