The Action

Understanding rare neurodevelopmental disorders (NDD) has the potential drive major new therapies for the common NDD of schizophrenia and Autism Spectrum Disorder (ASD).

NDD affect 1 in 25 individuals in Europe and have high impact on healthcare systems, economic development and society. Our key challenge is to link new knowledge from psychiatric genomics to identify neurobiological mechanisms that lead to NDD.

MINDDS focuses on NDD patients with rare pathogenic CNV, whose study have the potential to drive major new understanding and better therapies for all NDD, including the more common neuropsychiatric disorders of Autism Spectrum Disorder (ASD) and schizophrenia. Currently, lack of mechanistic knowledge hampers development of improved patient diagnosis and treatment.

MINDDS aims to substantially accelerate NDD research progress via a Europe-wide collaborative network to identify individuals who possess pathogenic CNV, agree standardized assessments and research protocols and facilitate data sharing and knowledge exchange for the benefit of researchers, clinicians and patients.

MINDDS is a pan-European partnership between researchers, clinicians and patient organizations to facilitate research on NDD associated with pathogenic CNV. It will focus on the development of improved patient identification and assessment, standardization of research protocols and guidelines and methodologies for data deposition, sharing and analysis.

Join The Action

The inclusion of further partners from currently participating COST Countries, or other countries within or outside the COST Network, is welcome and strongly encouraged during the entire duration of the Action.


#mindds - a @COSTprogramme #network- is happy to celebrate the #RareDiseaseDay with this amazing #painting done by Tessa, a talented young #artist 🧡
#rarediseases #22q @22Q11_Ireland @22q_es @22Q11_NI @steun22q11 @22qAwarenessDay @22q11Europe #research #patient #scicomm #art

"Viewing the brain as a computer that passively responds to inputs & processes data, we forget it's an active organ, part of a body that intervenes in the world, with an evolutionary past that shaped its structure & function." Fab article by @matthewcobb: