To establish a network of existing centres of expertise for dysmorphology in order to raise standards for diagnosis, management, and information exchange and dissemination, and to serve as a demonstration project for other EU networks of centres of expertise.
Most of the 2 500 recognised dysmorphic conditions are rare but collectively are the cause of high morbidity. Centres of expertise have been established in the EU by designation or reputation for patients with dysmorphic diseases, yet to date there is no formal network for dysmorphology. A European network of centres of
expertise would capture complementary expertise, and exert gearing effects on the diagnosis and management of dysmorphic conditions, which in turn will have a positive impact on the care and well-being of affected people and their families. The network will form a nucleus for a much larger European network and provide
a model for the development of future networks of centres of expertise.
Formation of a Europe-wide network of centres of expertise.
Creation and implementation of a web-based electronic dysmorphology diagnostic system (DDS).
Development, piloting and dissemination of management guidelines for selected dysmorphic syndromes.
Formalised network of centres of expertise for dysmorphology.
Functioning electronic dysmorphology diagnostic system (DDS).
Accredited management guidelines for selected dysmorphic conditions.