The European Commission has established “European Reference Networks” (ERNs). The ERN for rare pulmonary diseases is ERN-LUNG. This is a Network of European Healthcare Providers (HCPs) dedicated to ensuring and promoting excellence in care and research to the benefit of patients. ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages. ERN-LUNG is a non-profit, international, professional, patient-centric and scientific network and it is committed Europe-wide and globally to the prevention, diagnosis, and treatment of rare respiratory diseases through patient care and advocacy, education, and research.
ERN-LUNG is currently made up of 60 centres from 12 countries, focused on rare respiratory diseases and is grouped in 9 Core Networks representing the diversity of diseases and conditions affecting the respiratory system. The current Core Networks (sub-thematic areas) are: Interstitial lung diseases (ILD), Cystic fibrosis (CF), Pulmonary hypertension (PH), Primary ciliary dyskinesia (PCD), Non-CF bronchiectasis (NCFBE), Alpha1-antitrypsin deficiency (AATD), Mesothelioma (MSTO), Chronic lung allograft dysfunction (CLAD), and Other rare lung diseases.
ERN-LUNG Year 2 programme will now focus on using the established structures to offer services to patients and medical professionals throughout the European Union. ERN-LUNG will start using and improving the CPMS to the best of patients and colleagues. In accordance with the five-year plan the Network will add more supporting partners, associated partners and – if the next call should be published during this year – to add more members to the network as to cover all Member States of the EU. The network will continue to seek funding possibilities to improve the quality of care offered in the area of rare diseases of the respiratory system.

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In the second year of the ERN CRANIO, we will continue to work on sharing knowledge and expertise within our current network of 29 HCP's from 11 countries. It is most likely that we will expand our network in 3 different ways: 1. from within by expanding the field of expertise from participating HCP's; 2. with HCPs from new countries, particularly from Eastern Europe, and 3. with additional representative from patient advocacy groups via ePAG.
We have expanded the coverage of diseases somewhat regarding the incorporated ENT disorders, by including congenital nasal en neck anomalies.

The workpackages management, guidelines and standards of care, eHealth (incorporating CPMS), outcome, education and training, and dissemination will remain the same, but with new set goals for 2018.

There is an urgent need for a registry on craniofacial and ENT malformations, but unfortunately our registry grant application was put on the reserve list. This means that for the next year's budget we will have to include a significant amount of money to finance the start of a registry.
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Rare Hematological Diseases (RHD), covered by ERN-EuroBloodNet, involve more than 450 different diseases, malignant or non malignant, inherited or acquired, with different clinical and etiological features that preclude the use of a unique methodological approach to reach the common goals of the network. Nevertheless, the first working year of our network demonstrated that RHD share common problems including the frequent paucity of publicly accessible repositories of experts and facilities across Europe, leading to delays in diagnosis and treatment, and also gaps in education. Activities developed during the first year of ERN-EuroBloodNet’s activity therefore focused on gathering comprehensive information on experts and state-of-the-art guidelines for diagnostic and treatment procedures, as starting point for subsequent objectives.
The annual programme for the second year is structured in two main directions: a) Expand and exploit the dynamic ERN-EuroBloodNet repository of RHD experts and facilities gathered during the first year. Based on the gaps identified, new actions will be promoted to improve the delivery of best care and promotion of research and patient registries, b) promote continued medical education and patient education (also based on the identification of gaps in this field), especially through eLearning and preceptorships in expert centres. This annual programme will also promote the Clinical Patients Management System (CPMS) among ERN-EuroBlood Members, and help to customize it to the various RHD. ERN-EuroBloodNet will also cooperate with the ERNs coordinators group and other working groups in the field of rare diseases.
Policy reports will be elaborated to facilitate shaping of national health policies in order to improve the delivery of health services and the best allocation of resources needed for specific RHDs.


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