Our association exists because we, as affected people, know exactly what it means to live with a rare disease from the group of the centronuclear myopathies (CNM).
That is why we offer people with CNM and their relatives a room for exchange and give them a voice. Our own search for new perspectives is what drives us.
We dream of a world where Centronuclear Myopathy (CNM) has a cure and CNM patients have the best possible quality and expectancy of life.
In this, we are a living network supported by people with CNM and their families, science and research, medicine and others.
We inspire new projects on an international level that strengthen the exchange of knowledge and hope among all.
We work together to connect ourselves as well as other people with CNM and family members and to show them the many possibilities that a life with CNM offers.
We are also committed to ensure that people with CNM receive the best possible treatment by providing comprehensive information and support to medical professionals and therapists.
On an international level, we promote the exchange of knowledge and invest in research to find new cures and therapies.