We founded the ZNM – Zusammen Stark! e.V. association for myotubular myopathy and other centronuclear myopathies at the family reunion in Göttingen in July 2015. A lot has happened since then…
We have grown and now have over 250 members and 160 supporting members behind us.
This is mainly done through our annual family conference, webinars and our closed Facebook support group. We are also actively investing in research to find a treatment for these diseases. This year, the third research project was successfully launched thanks to donations from the association.