If research is a collective asset, sharing information is fundamental for the advancement of research throughout the world, especially in tackling unknown or little-known conditions such as rare genetic conditions. As a result we make clinical, genetic and biological data available to the scientific community by means of specific tools and services.

We make biological samples taken from patients with rare genetic conditions available to develop treatments and improve diagnostic tools. Read more

We share personal, genetic and medical information on patients with genetic neuromuscular conditions with the scientific community, to accelerate the development of treatments. Read more

We promote open access to the results of funded research, in line with the aims of our mission and to help society.
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A chance for researchers, patients and health associations to get together every two years.
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