Our Mission Statement
We seek to provide a patient centred network which will meet the needs of those with rare congenital malformation and intellectual disability syndromes, both diagnosed and undiagnosed. We will provide an infrastructure for diagnosis, evidence-based management and collection of secure patient data. Members of the network will share best practice and disseminate guidelines to optimise and improve coordination of patient care. We will facilitate training, and capacity building in field, be active and collaborative researchers and work towards development of diagnostic tests and future therapies