We are the first non-profit
association registered in Germany
involved with people
affected by myotonia
potassium-aggravated myotonia (PAM),
Isaacs-syndrome and other
We have installed an online
presence in November 2014 shortly after the foundation of
We hope that a lot of people
join the registry to support our activities.
Our activities aim at the
We want to make the different
disorders better known to the public.
We want to share knowledge
about these rare diseases.
We want to inform about
medical organisations and clinics as important contacts
diagnosis and medication.
At our meetings you have the
opportunity to get in contact with other people who are
affected by the same rare
disease and exchange experience concerning life with
Have you ever shaken hands
with a person affected by the same rare disease?