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About us

Vision/Mission

Founded in 2015, we are the German self-help association for people with a group of very rare muscle diseases, the centronuclear myopathies (CNM). We represent 250 people from 85 families with a CNM in Germany, the Netherlands, Belgium, Switzerland, and Austria (as of November 2023).

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Management Board

Our current board of ZNM-Zusammen Stark! introduces itself:
Left Frank Schulte (Treasurer), center Mareen Bockstette (Deputy Chairwoman), right Holger Fischer (1st Chairman)

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Working groups

In our association, we are organized into working groups.

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Research Advisory Board

The Research Advisory Board of ZNM – Zusammen Stark! e. V. consists of six members of the association and four external members. These are currently (May 2024) Dr. Bärbel Nötzel, Carl-Phillip Nagy, Dr. Jennifer Bilbao, Marian Beelen, Ulrike Hauer and Thomas Hartmann as association members and Dr. Johann Böhm, Dr. Andreas Roos, Dr. Katharina Vill and Dr. Nicol Voermans as external members.

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Our history

As part of the family reunion in Göttingen in July 20215, we founded the association ZNM – Zusammen Stark! e.V. for myotubular myopathy and other centronuclear myopathies.

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Family stories

Since the association was founded in 2015, we have become many and therefore we are very diverse. This is wonderful to see and gives many families a lot of strength and affection. Friendships have developed and are developing, exchanges are possible and questions can be asked. Some families introduce themselves and their stories. Thank you very much for this!

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Transparency

We have been part of the Transparent Civil Society Initiative since April 2021 and are therefore allowed to display the logo. We are committed to publishing the Articles of Association, the names of the key decision-makers and information on the source of funds, use of funds and personnel structure.

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