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Patients Videos Testimonies WSCD2020

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.

  • WSCD 2020 EuroBloodNet -The establishment of the European Network of SCD PO: 9 patients from Portugual, Italy, Spain, France have given testimony on the video.

Patients Associations involved:

Drépavie

SOS GLOBI Aquitaine

United Onlus

Libera Associazione contro la Talassemia CATANIA

ASAFE - Asociación Española Enfermedad FALCIFORME

APPDH Associação Portuguesa de Pais e Doentes com Hemoglobinopatias

  • WSCD 2020 EuroBloodNet - SCD Research Prioritization Workshop at ASCAT Video: 5 patients from: Portugual, USA, Italy, Netherland, Cyprus have given testimony on the video.

Patients Associations involved:

I-X-L

ASAFE - Asociación Española Enfermedad FALCIFORME

APPDH Associação Portuguesa de Pais e Doentes com Hemoglobinopatia

Associazione Pazienti Drepanocitici Padova (AMD)

Euro Blood Net