ERN-EuroBloodNet main goal is to improve the healthcare and overall quality of life of patients with a rare hematological disease (RHD) by facilitating best practice sharing for safe and high-quality cross-border healthcare and developing more evidence based clinical tools and cost-effective treatments. As a contribution to the 3rd Health Programme (objective 4-Facilitate access to better and safer healthcare for EU citizens), EuroBloodNet will aim at decreasing current cross-border health barriers. EuroBloodNet gathers 66 highly skilled multidisciplinary healthcare teams in 15 Member States, and advanced specialised medical equipment and infrastructures which will facilitate concentration of resources for the design, validation and implementation of high-quality and cost-effective services aimed at facing the challenges of RHD. Involvement from the outset of patient associations will contribute to patient empowerment, in keeping with EuroBloodNet patient-centred approach. EuroBloodNet’s objectives will be achieved through a) the implementation of a reliable repository of best healthcare services available across EU, guidelines for RHD, systematic assessment of clinical outcome indicators, assessment and promotion of ongoing clinical trials and collaborative research initiatives, and b) the development of inter-professional consultation systems and blended (on-site & on-line) educational programmes and short stays. Expected outcomes include reduction of healthcare inequalities for RHD in the EU by a)establishing a cross-border referral system allowing safe information, samples and patient mobility, b) provision of equal access to highly specialised procedures and innovative therapies resulting from best practice sharing, continuous medical education and virtual interprofessional consultation for complex RHD cases, and c)facilitation of a timely and efficient translation of research results into patient oriented strategy at the clinical and the public health level
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Rare Eye Diseases (RED) represent a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while their epidemiology remains mainly unclear. RED affect a limited number of patients which are dispersed geographically and are the leading cause of visual impairment/visual loss in children and young adults in the EU. Currently the limited number of patients in combination with the scarcity of relevant knowledge, resources and expertise represent major barriers to early diagnosis, access to proper care and optimal treatment, and to the improvement of medical expertise, specialized training and research. However, visual impairment/visual loss poses a huge social-economic burden on individuals, the healthcare system and the society. ERN-EYE is dedicated to provide best care for EU RED patients.
By bringing together knowledge, new and existing resources and expertise across the EU, ERN-EYE mission is to facilitate access to a better, safer, high-quality, cost-effective, and cross-border healthcare system for all these European citizens with RED. ERN-EYE currently consists of 29 healthcare providers originating from 13 Member States and will cover mainly genetically-based RED. The heart of the ERN-EYE project lies in the creation of a virtual Rare Eye Diseases Clinic: EyeClin. As such, EyeClin will bring expertise to all EU citizens affected (or suspected to be affected) by a RED and will allow them secondary participation to initiatives generated or recognized by the ERN (registries, research, trials, etc.) EyeClin has been subdivided in 4 clinical departments: retinal RED, paediatric RED, neuro-ophthalmology RED, anterior segment RED, comparable to the ones found in a standard university hospital and 6 transversal departments corresponding to: genetic diagnosis, research activities, registries, guidelines, dissemination and outreach, medical training and teaching.
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The Rare Immunodeficiency, Autoinflammatory and Autoimmune Disease Network is dedicated to bring together concerted efforts from the leading European centres and existing scientific networks for primary immunodeficiency disorders (PID), secondary and acquired immunodeficiency disorders (SAID), vasculitis and paediatric rheumatic diseases. 24 core centres and >100 potential affiliate centres are involved to improve patient care across Europe using complex diagnostic evaluation and highly specialised cutting edge therapies. Following our motto “from rare care to frequent cure”, this network aims to facilitate access to better and safer healthcare for EU citizens. We will bring up the weakest countries to the level of the highest and thus contribute to the reduction of inequalities within EU Member States. Together with patient groups and other stakeholders including European societies and combining our clinical and research expertise with e-Health tools, we will develop high standards of clinical care. We will enable centres of excellence to drive interdisciplinary clinical research to facilitate recent rapid advances in molecular genetics to be available for patients across Europe. The ERN RITA network will enable, for the first time, systematic and long-term cross-fertilization of historically distinct initiatives. This will encourage equality of healthcare provision for rare disease patients all over Europe.
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