About us

The sound you have just heard is not the sound of a bomber but the so-called “myotonic roar”, the characteristic sound you hear during the EMG (electromyography) muscle test, with the persons who have congenital myotonia disease.

The Association for Persons with Congenital Myotonia and Related Neuromuscular Diseases  (or Myotonia Congenita Association) was founded in 2010 for people with congenital myotonia and related neuromuscular diseases, their family members, medical experts and institutions that deal with these kind of diseases and all the people who are interested in this issue.

The Association for Persons with Congenital Myotonia and Related Neuromuscular Diseases  is registered with the State Administration Office of the City of Zagreb (Ured državne uprave grada Zagreba) and the inner structure is determined by its Statute.

The main assignments and goals of the association are:

– gathering and processing information on people with congenital myotonia and related neuromuscular diseases

– improving early discovery and diagnosis of the disease and supporting scientific research on congenital myotonia and related neuromuscular diseases

– bringing together patients , medical experts and people of other professions who help care for the people with congenital myotonia and related neuromuscular diseases

– providing information on the treatment and helping with medical supply

–  educating people who suffer from this illness and their families

– organizing symposiums, lectures, forums etc. on the needs of people with congenital myotonia and related neuromuscular diseases

In order to realize its goals and assignments, the association:

-collaborates with other similar associations, public institutions, fonds and professional services

– collaborates with local government and self-government

– hires members and associates to do volunteer work

– organises social gatherings and symposiums and participates in symposiums and activities of other subjects

– publishes books and magasins in their field of expertise

-strengthens the cooperation with related organisations in Croatia and abroad.