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Collaborations with other associations with similar purposes to ours


At the time of the establishment of our association we asked ourselves whether not to join the existing and largest "Association of rare genetic diseases" of which we unreservedly share the aims and methods of intervention and support.

However, based on the specificity of the PCDH19 syndrome and our aims to support research, we are convinced of the opportunity to create an independent association without excluding the possibility of collaborating and joining efforts where there are initiatives aimed at raising public awareness on existence of rare genetic diseases and the need to act at different levels: institutional (National Fund for scientific research), associative and individual.

The pursuit of our goals defined in the Statutes (see) will in no way prevent collaboration and the development of future common actions.


Therefore, below we also point out the sites of associations, institutions and organisms active in the field of rare genetic diseases, referring to the list of links published by the Swiss Association of rare genetic diseases

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