EURO BLOOD NET - European Reference Network for Rare Hematological Diseases

The ERN EuroBloodNet includes rare haematological diseases which are rare non-oncological haematological diseases of the pediatric and adult age, and oncological diseases of the adult age. These hematologic diseases include disorders affecting the hematopoietic cells of the blood and bone marrow, lymphatic organs, and factors involved in regulating coagulation. Most of these disorders are rare. They can be divided into six categories: rare red blood cell disorders, bone marrow failure, rare coagulation disorders, hemochromatosis and other rare genetic conditions of iron metabolism, myeloid malignancies, and lymphatic tissue malignancies.
The diagnosis of rare blood diseases requires considerable clinical experience and the possibility of accessing a wide range of laboratory and instrumental investigations. These investigations make it possible to classify these diseases in a precise manner according to the criteria of the World Health Organization and using international scores and, where possible, inclusive of biomarkers.
Given these assumptions and considering that some rare blood disorders are very rare, correct diagnosis is often overlooked or delayed, particularly in elderly patients. Treatment is also often difficult due to the need for infrastructural elements, dedicated multi-specialist teams and the difficulty of having access to specific treatments such as haematopoietic stem cell transplantation or the administration of coagulation factors. In some European countries effective programs have already been implemented for the early diagnosis of some rare blood disorders. However much still needs to be done to homogenize screening procedures.
EuroBloodNet, leveraging on the experience gained thanks to the European Network funded by the European Union on Rare and Congenital Anemias (ENERCA) and the European Hematology Association (EHA), aims to improve access to care systems for patients affected by rare hematological diseases, to develop guidelines and best practices, to improve training and knowledge sharing opportunities, to offer clinical suggestions where experiences in the sector are not so strong and finally to increase the number of clinical trials in this field of medicine.