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About us

The 22q11 Europe organization was launched in October 2016 as a supranational European network of 19 national self-help organizations from 14 countries. It is supported by the idea of promoting the cross-border exchange of people affected by the 22q11 deletion syndrome, developing international research in the network and motivating young scientists to conduct research on the second most common genetic defect.

22q11 Europe provides information on new and best practices in syndrome related medical diagnosis and treatment and on therapeutic approaches with the ultimate goal of improving the quality of life of those affected in all European countries. The organization has set out to give those affected a voice in Europe and bring the “least known genetic defect” to the public.

Under the slogan Information – Encounter – Exchange 22q11 Europe organizes the European 22q11 Congress every two years (in odd years). All interested are invited to join us, to support us in our work for those affected and to cooperate.