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EURORDIS Membership Meeting – Bucharest 2019

Project Description

Members of The National Alliance for Rare Diseases Support – Malta attended the EURORDIS Membership Meeting (EMM), which took place on 17 and 18 May 2019 in Bucharest. Members of the Alliance connected our counterparts from all over Europe and beyond, learning from their experiences and sharing our Maltese experience of working with people with rare conditions and disabilities.

Our Board Member, Alistair de Gaetano, addressed the workshop – How to make the best use of the EURORDIS Position Paper on Holistic Care.

The National Alliance for Rare Diseases Support – Malta also congratulates the European Rare Diseases Organisation EURORDIS) for including the concept of disability in the position paper, since rare disease patients are most times disabled by an inaccessible society. Proud to also showcase best practices in Malta, which other countries can follow, putting the person’s identity and needs first rather than their disease.