Official launch of EuroBloodNet, the European Reference Network on rare haematological diseases

EuroBloodNetPatients suffering from rare blood disorders will benefit from networks of excellence across the European Member States.

At the third conference on European Reference Networks (ERNs) this month in Vilnius, Lithuania, EuroBloodNet was officially announced as one of the recently approved ERNs.

ERNs are networks of healthcare providers and centres of excellence in Europe aimed at improving quality, safety, and access to highly specialised healthcare. “Over the years, the Cross Border Healthcare Directive has proven a lack of ability to remove the main barriers for patients who seek care in another member state. It seems like crossing the border has been more a privilege for patients who can afford paying upfront for their treatment (and bearing the uncertainty of being reimbursed or not), than a right of all European patients to access the best possible care they are entitled to”, says Ananda Plate, CEO of Myeloma Patients Europe, one of the elected patient representatives of EuroBloodNet, the ERN on rare haematological diseases.

ERNs are platforms for clinicians and researchers to share expertise, knowledge and resources across the EU. This initiative of the European Commission, supported by all Member States, aims to address common challenges faced by professionals when diagnosing and providing highly specialised healthcare in complex, rare or low prevalence diseases. It does not interfere with already existing networks. ERNs will improve clinical outcomes and quality of life of people living with these types of conditions across the EU.

EuroBloodNet results from joint efforts of the malignant and non-malignant community of haematologists and patient advocacy organisations. It is coordinated by Prof. Pierre Fenaux from the Hopital Saint Louis (Paris), together with Prof. Béatrice Gulbis from the University Hospital Erasme (Brussels). The network brings together 66 highly specialised hospital centres with expertise on malignant and non-malignant rare haematological diseases.

Patient involvement is key in ERNs. For EuroBloodNet the haematology patient community elected five representatives: Amanda Bok (European Haemophilia Consortium), Angelo Loris Brunetta (Associazione Ligure Thalassemici Onlus), Jan Geissler (Leukaemia Patient Advocates Foundation), Ananda Plate (Myeloma Patients Europe), Perre Aumont (Association de Soutien et d’Information à la LLC et la maladie de Waldenström)  and Sophie Wintrich (MDS UK Patient Support Group) successfully ensured that the patient voice is fully represented in the ERN Board and sub-clinical committees – a great achievement and a milestone in increasing the role of patients in clinical care as it evolves in Europe. According to Plate, “ERNs have the potential of alleviating these barriers in a very smart way, and improve access to very costly or highly specialised care and diagnosis for patients, no matter where they live. Also, they mainly focus on moving knowledge across the border rather than moving patients, which makes thing easier”.

After their first meeting in January 2017 in Paris, and a second one in Vilnius in March 2017, EuroBloodNet will gather again at the congress of the European Haematology Association (EHA), from June 22-25, in Madrid, Spain.