Genida is an international participatory database for collecting relevant medical information on genetic forms of ID/ADS for families and professionals.


The Research group Clinical Neurogenetics at the Radboud University aims to improve care and management of rare genetic neurodevelopmental disorders (NDs) by constructing a concept of personalized healthcare. We aim to better understand the underlying neurocognitive and biological mechanisms to further investigate new therapeutic interventions.

The organisation Asklemad from Spain aims to promote the quality of life and social integration of people affected by Kleefstra Syndrome and associated disorders and their families.


The Kleefstra syndrome community stretches rights across the world and is growing. exists to offer support, education and awareness of this rare condition.  Over 500 families currently benefit from our community support network.

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IDefine is a volunteer-led nonprofit organization dedicated to discovering life-changing treatments and cures for those with intellectual disabilities stemming from genetic disorders.