Patients undoubtedly constitute one of the main cornerstones of the future European Reference Networks (ERNs), thus the involvement of patients organizations must be assured from the beginning in order to guarantee their pivotal role within the networks and, therefore, increasing the patients’ empowerment.
For this reason, EURORDIS has developed European Patient Advocacy Group (ePAG) for each ERN disease grouping. ePAGs bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN decision-making processes and a democratic process of patient representation.
The newly elected ePAG patient representatives have now been announced. In the context of rare haematological elected ePAG Patient Representatives are:
- Amanda Bok, European Haemophilia Consortium (EHC)
- Jan Geissler, Leukemia Patient Advocates Foundation
- Sophie Wintrich, MDS UK Patient Support Group (and MDS Alliance)
- Angelo Loris Brunetta, Associazione Ligure Thalassemici Onlus
- Ananda Plate, Myeloma Patients Europe
More information: EURORDIS, ENERCA News, list of ePAG representatives [PDF]