Affected individuals and their family members

  1. Think about what experiences from your life with Myotonic Dystrophy you want to report. You may like to read our ideas and suggestions.

  2. Write your story on your computer. It should be between 500 and 600 words in length.

  3. We hope you will attach a digital photo of yourself to your story. Providing us with a picture is optional.

  4. Complete our form and send it along to us with your story and optional photo.


Your story and your first name will be filed in the online-community Myotone Dystrophy on RareConnect, where it will be automatically translated into more than ten languages. We will inform you about this publication by email. 


At any time, you can request the withdrawal of the publication of your story on RareConnect from the "Our Voices - Our Life" team or the RareConnect team directly. 

How to Participate

From among all contributions, we select the stories that will be included in the project's book. If yours is there, we will ask you to edit a maximum of two computer translated stories of others in your native language. 


We will be presenting another thirty stories together with the pictures at the project celebration in Switzerland.

Andreas Herzog & Erich Maurer,

with the consent of

sponsored by