The ERN-EuroBloodNet is playing a key role in Europe for making SCD burdens visible to scientific community, public-at large and policymakers. Main aim was indeed to spread patients' needs and expectation by giving to patients the possibility of expressing themselves and providing editing and recording solutions, media channels and logistics assistance. This is the reason why for the World Sickle Cell Disease Awareness Day 2020 (WSCD) two SCD patients' testimony videos have been published on the EuroBloodNet's YouTube Eucational Channel, the 19th of June 2020.
Patients Associations involved:
Libera Associazione contro la Talassemia CATANIA
ASAFE - Asociación Española Enfermedad FALCIFORME
APPDH Associação Portuguesa de Pais e Doentes com Hemoglobinopatias
Patients Associations involved:
ASAFE - Asociación Española Enfermedad FALCIFORME
APPDH Associação Portuguesa de Pais e Doentes com Hemoglobinopatia
Associazione Pazienti Drepanocitici Padova (AMD)