EuroBloodNet European Reference Network starts with the hematology European Patient Advocacy Group (ePAG) - and CML Advocates Network is in!
24 European Reference Networks, based on an initiative of the European Commission and EU Member States, are networks of healthcare professionals, centres of expertise and patient organisations aimed at improving quality, safety, and access to highly specialised healthcare in Europe.
The EuroBloodNet European Reference Network, covering rare haematological diseases, has kicked off on 27 January 2017 in Paris with 66 partner organisations from 15 countries. The Leukemia Patient Advocates Foundation, CML Advocates Network and CLL Advocates Network are deeply involved in EuroBloodNet to make sure it delivers to patients' needs.
This is a great step forward after years of debate, legislative effort and consensus building to establish 24 ERNs based on the EU Cross Border Healthcare directive, in which the CML Advocates Network was deeply involved and is now part of the European Patient Advocacy Group (ePAG) of EuroBloodNet, which will coordinate patient community input and will be part of the EuroBloodNet governance.
What are European Reference Networks?
European Reference Networks (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 type of conditions across the EU.
ERNs are part of the legal framework of the EU "Patients' Rights in Cross Border Healthcare" Directive. Funding is provided by Member States and the European Commission to run these networks. The rare disease patient organisation EURORDIS has worked hard on the EU policy level that patient involvement will be a key element of ERNs and their governance. This has been adopted by the European Commission Expert Group for Rare Diseases, where Jan Geissler has been one of the experts appointed by the European Commission amongst 8 patient representatives for the past four years.
Hematology is one of the 24 disease groupings where the Commission and Member States have accepted applications for the establishment of European Reference Networks in December 2016. The CML Advocates Network has been involved since the early discussions on an ERN in hematology.
EuroBloodNet has kicked off on 26 January 2017 in Paris. Five patient representatives are involved in the governance of the EuroBloodNet ERN, namely Jan Geissler (Leukemia Patient Advocates Foundation), Sophie Wintrich (MDS Alliance), Amanda Bok (European Haemophilia Consortium), Ananda Plate (Myeloma Patients Europe), Loris Brunetta (Thalassaemia International Federation) and Pierre Aumont (CLL Advocates Network / EWMNetwork).