EuroBloodNet is the European Reference Network (ERN) in Rare Hematological Diseases (RHD) and it was officially approved by the European Commission on December 2016 and started its activity on 1st March 2017. Although the UK is not longer part of the EU, we are still able to collaborate with the network in an unofficial capacity.
ERNs are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources.
No country alone has the knowledge and capacity to treat all rare and complex diseases. ERNs offer the potential to give patients and doctors across the EU access to the best expertise and timely exchange of life-saving knowledge, without having to travel to another country.
The 2011 Directive on Patients’ Rights in Cross-border Healthcare not only enables patients to be reimbursed for treatment in another EU Member State but also makes it easier for patients to access information on healthcare and thus increase their treatment options. The Directive became law in EU Member States in 2013 and emphasises the value of eHealth and the importance of interoperability in national health IT systems in facilitating information sharing.
ERN coordinators convene ‘virtual’ advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools in order to review a patient’s diagnosis and treatment.
EuroBloodNet covers both oncological and non-oncological rare haematological diseases which includes aplastic anaemia and PNH.
There are 8 patient representatives (ePAGs) involved in EuroBloodNet (including Maria Piggin) with a view to ensuring that EuroBloodNet has a patient-centred approach.
For more information about EuroBloodNet please see EuroBloodNet