Patient organisations represented in ERN-EuroBloodNet

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:

ePAGs POs affiliation

Creation of an European Patient Advocacy Group (ePAG) of hematological rare diseases patients organizations that are covered by ERN-EuroBloodNet.

SCD patient priority blog

A Blog written by people living with SCD

ERN-EuroBloodNet Webinars

Adressed to RHD patients and patients organisations

Cutaneous Lymphoma Educational Actions

Clinical domain where there was a need to establish educational actions on CL for patients and patient organisations

Establishment of the European Network of SCD Patients Oganisations

Creation and promotion of a network of SCD patients organizations

Patients Videos Testimonies WSCD2020

Spreading patients' needs and expectation during the World Sickle Cell Disease Awareness Day 2020 (WSCD)

SCD Patients Testimonies at UNESCO

Organization of two patients sessions for the 4th Global Congress on Sickle Cell Disease at UNESCO

Co-author of Poster EHA

Presentation during the 25th European Hematology Association Annual Congress

Sickle Cell Disease Patients Conversation Group With A Psychotherapist

Pilot developed in Spain via the Patients Association ASAFE.

ASCAT

Discover all the participations of the ERN-EuroBloodNet at the ASCAT Conference, year by year.