What is the purpose of this website?

We believe that there are currently several important studies that have a good chance of success. In order to seize that momentum and give it an extra push, we want to clearly map out what is happening and who is fighting with us. Due to the rarity of MDC1A / Lama2 CMD, international cooperation is an absolute must. Thanks to the increase in scale, scientific research and its results become much more valuable. With this website we hope to create an international platform where all important information can be centralized and found by everyone involved in the struggle for treatment. We hope that this website provides a good overview of all important developments in this field and / or refers to the correct website for more information.

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Do you have a question for one of the experts or researchers with whom we are in contact? About an investigation, a treatment method or other information that you are looking for? Submit your question and we will get you a personal answer as soon as possible. We will also publish the answer on this website.