ERNICA - European Reference Network on rare Inherited and Congenital Anomalies (ICAs) aims at improving quality and safety and access to highly specialized healthcare for patients with ICAs including rare-gastrointestinal diseases. These diseases have low and extremely low incidence, for this reason pooling the available resources at European level is a necessity to spur advancements in care and treatment. It is for this reason that our vision is to provide to all European patients, regardless of their origin or economic situation, the best multidisciplinary initial care. ERNICA is set up as a relatively small European Reference Network, bringing together 20 Healthcare Providers from 10 Member States, that aims to grow expertise in the area of prenatal health and in countries where there is a lack of knowledge and expertise.
Motivated by the spirit of bringing in expertise from different specialties and stakeholder groups, ERNICA provides a holistic approach to care for patients with rare inherited and congenital anomalies and support for their families. This takes into account the physical, emotional, social, economic, and spiritual needs of patients and their families, as well as the changing needs throughout the life-cycle. Our work is based on the strategic partnership between healthcare professionals and patient representatives involved in ERNICA that will inform all activities undertaken by the Network. The Multiannual Plan will be focused on the following objectives: 1) understanding the existing resources in the area of diagnostic and treatment, 2) improving the use of common epidemiological tools, 3) identifying the current gaps in the provision of crossborder care and e-services, 4) assessing the educational needs of patients and healthcare professionals, and 5) developing the research agenda on ICAs to address the current gaps. The attainment of these objectives will facilitate access to quality and cost-effective care and reduce inequalities in Europe.
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