DM Community Organizations (in Europe often called "Patient's Associations") offer information and advice to individuals affected with a neuromuscular disease. Such organizations that encourage support groups for individuals living with Myotonic Dystrophy also allow us to introduce this project to their DM-affected members like yourself. In other words, we use the existing contacts of these organizations with their DM-affected members to invite them to participate in this project.
In the marketing / distribution of the Book "Our Voices - Our Life", we want to involve as many DM community Organizations worldwide as possible. By doing this we hope to encourage better understanding of DM and reach people with DM to bring them into the larger community.
"Our Voices - Our Life" shows a picture of our life and the many-sided effects of the disease symptoms. It is important that our patient community organizations know this diversity in order to better advise and accompany us.
The Book - supplemented by an organizations's own documents and materials - can also become an element of the marketing or fundraising efforts by patient associations and foundations.
Below, you will find the list of associations that we have informed about the project.
Is there one missing from the list in your country that works for people with Myotonic Dystrophy?Please use our contact form to let us know the corresponding postal address or other contact information.
If you are reading this text as a DM Community Organizations and if you have received our letter, please visit the Member Area using the password provided in our letter.