The inaugural meeting of the Global Alliance of Sickle Cell Disease Organizations (GASCDO) took place last 10th of January in Amsterdam. 10 Countries on 5 continents representing Sickle Cell Disease (SCD) patients all over the word discussed how to build strong advocacy synergies at a global level in order to tackle global SCD challenges.
ERN-EuroBloodNet was invited to the event on behalf of the voice of the European SCD Patients. In this occasion ERN-EuroBloodNet manager, Mariangela Pellegrini, presented to the audience the project carried in collaboration with EURORDIS: the establishment of an European Network of SCD Patients Organizations: a bottom-up umbrella network of national and local organizations of SCD patients advocates, whose objective is to give a strong representation of the disease and make its needs visible at European level.
The face-to-face meeting was moderating by the ERN-EuroBloodNet ePAG Jan Geissler (Co-founded the CML Advocates Network and Founder and CEO of Patvocates ) who supported Lanre Tunji-Ajayi, CEO of the Sickle Cell Awareness Group of Ontario and President/Chief Executive Officer at GASCDO, to get the global alliance started, to shape the new alliance, to develop its governance and strategy and managing the logistics.
Questions raised were: how can EuroBloodNet help the alliance to get established? Once the European Networks of SCD Patients Organizations will be launched, how will the collaboration between the European and the Global network be structured? How can the GASCDO collaborate with EuroBloodNet and the European network?
Outcomes from this fruitful meeting will be disseminated soon. ERN-EuroBloodNet is very proud of being part of this new start!