Why, how and how to

On the next pages you will find answers to the most frequent questions about our project and the way it is organized, a guideline to signing up with RareConnect and the functionalities of the platform.


The goal of "Our Voices - Our Life" is to reach as many DM-affected individuals in as many countries as possible. We are looking for DM-affected volunteers who would like to get involved and to ad time, knowledge and skills to the project. Below you will find a small "job-market". Maybe you would like to add something completely different to the success of "Our voices - Our Life"? We will be happy to hear from you!

Translations and text-edits

The translations of the texts as well as the subtitles of our video interviews should be as accurate as possible and must be reworked online. We look forward to assisting you! Currently we are looking for people who are affected and who speak and write one or more of the following languages: German, French, English, Spanish. Italian, Portuguese, Russian, Arabic, Japanese. We look forward to your mail.

Contact persons

It can be easier to get personally involved in writing a story or recording a video interview. Do you have contacts with other victims and relatives in your area or beyond? Would you like to support them in this sense? The appropriate formats as well as a careful instruction we will gladly provide. We look forward to your mail.

(social) media

Information campaigns on Facebook in English-speaking countries and - if possible - cooperation with the press will also make our project known. These campaigns must be carefully coordinated to maximize impact. If you have the necessary knowledge and contacts and are yourself affected by myotonic dystrophy, we should definitely get to know each other. We look forward to your mail.

Stories and varia

The success of "Our Voices - Our Life" is the number of stories we collect and give our community a face. Maybe they have completely different thoughts and ideas on how we could achieve this goal together? Maybe you also need specific support in writing your own story or the company of someone from your circle of acquaintances? We look forward to your mail.

Andreas Herzog & Erich Maurer,

with the consent of

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