EuroBloodNet is directing several actions to improve the live of patients with rare hematological diseases. Click on each action to discover which Associations are involved:
Creation of an European Patient Advocacy Group (ePAG) of hematological rare diseases patients organizations that are covered by ERN-EuroBloodNet.
A Blog written by people living with SCD
Adressed to RHD patients and patients organisations
Clinical domain where there was a need to establish educational actions on CL for patients and patient organisations
Creation and promotion of a network of SCD patients organizations
Patients' Educational Session at ASCAT 2020 for people living with SCD
Spreading patients' needs and expectation during the World Sickle Cell Disease Awareness Day 2020 (WSCD)
Organization of two patients sessions for the 4th Global Congress on Sickle Cell Disease at UNESCO
Presentation during the 25th European Hematology Association Annual Congress
Pilot developed in Spain via the Patients Association ASAFE.
Patients' Educational Session at ASCAT 2020 for people living with SCD (January edition)
Patients' Educational Session at ASCAT 2020 for people living with SCD (October edition)