The EU Reference Network ITHACA

ERN-ITHACA is a patient-centred network that meets the needs for highly specialized, multidisciplinary healthcare for patients with rare (multiple) malformation syndromes and rare intellectual and other neurodevelopmental disorders of genetic, genomic/chromosomal or environmental origin, both diagnosed and undiagnosed.

ITHACA stands for Intellectual disability, TeleHealth, Autism and Congenital Anomalies. The name ITHACA also refers to the Odyssey that for many families the diagnostic journey of a child with a rare developmental disease represents.

Led by Prof. Alain VERLOES at APHP-Robert DEBRE University Hospital since March 2019, the network today consists in 70 full Member HCPs from 25 Member States. Through sharing expertise, experience and resources, ERN-ITHACA aims to further patient care, research and access to information about rare congenital malformations and intellectual disability.

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ERN-ITHACA is a patient-centred network that meets the needs for highly specialized, multidisciplinary healthcare for patients with rare (multiple) malformation syndromes and rare intellectual and other neurodevelopmental disorders of genetic, genomic/chromosomal or environmental origin, both diagnosed and undiagnosed.

ITHACA stands for Intellectual disability, TeleHealth, Autism and Congenital Anomalies. The name ITHACA also refers to the Odyssey that for many families the diagnostic journey of a child with a rare developmental disease represents.

Led by Prof. Alain VERLOES at APHP-Robert DEBRE University Hospital since March 2019, the network today consists in 70 full Member HCPs from 25 Member States. Through sharing expertise, experience and resources, ERN-ITHACA aims to further patient care, research and access to information about rare congenital malformations and intellectual disability.

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