EHA Library - The official digital education library of European Hematology Association (EHA)

Almost all hematological disorders are rare diseases, affecting less than 1 in 2000 individuals, justifying their inclusion in a European Reference Network (ERN). ERN are networks created following the Directive 2011/24/EU on cross border health which include nationally recognized Centres of Expertise aiming to ensure the same level of access to health services of European citizens affected by a rare disease. EuroBloodNet, the ERN in Rare Hematological Diseases (RHD), results from a joint effort of the European Network on Rare and Congenital Anaemias (ENERCA), the European Hematology Association (EHA), and European hematology patient organisations represented in both the EURORDIS European Patient Advocacy Groups (ePAGS) and the EHA Patient Organisations Workgroup. EuroBloodNet gathers 66 highly skilled and multidisciplinary healthcare teams in 15 Member States, and advanced specialized 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.

EuroBloodNet’s main goal is to improve the healthcare and overall quality of life of patients with a RHD by 1) Improving equal access to highly specialized healthcare delivery for RHD across Europe 2) Promoting best practices in prevention, diagnosis and safe clinical care across Europe 3) Disseminating cutting-edge knowledge and facilitating continuous medical education in the field of RHD 4) Providing inter-professional consultation by sharing of expertise and safe exchange of clinical information 5) Fostering European cooperation in highly specialized procedures for diagnosis, promotion of clinical trials and innovative treatments and research.

RHD are covered in two main thematic groups: non-malignant diseases and malignant diseases, and six sub-thematic areas. Non-malignant diseases include 4 sub-thematic areas: 1) Rare red blood cell defects 2) Bone marrow failure (BMF) and hematopoietic disorders 3) Rare Bleeding-Coagulation disorders and related diseases and 4) Haemochromatosis and hereditary iron metabolism disorders. Malignant diseases include 2 sub-thematic areas: 1) Myeloid malignancies and 2) Lymphoid malignancies. Methods and tasks aiming to achieve EuroBloodNet specific objectives have been split into five categories of Transversal Field of action (TFA): 1)Cross border health 2)Best practices 3)Continuing medical education 4)Telemedicine 5)Clinical trials and research.

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 inter professional 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.

EuroBloodNet, with the experience gained thanks to the EU-funded ENERCA and EHA, will seek to improve access to healthcare for RHD patients, to promote guidelines and best practice, to improve training and knowledge sharing, to offer clinical advice where national expertise is scarce, and to increase the number of clinical trials in the field.