95, Rare Alliance Greece City: Athens Phone :
“95”, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare and an undiagnosed rare disease. It was founded in Athens in 2019, and today has more than 60 members from all over Greece, with the number constantly increasing.
The Organization's main objective is to address everyday problems faced by patients with rare and undiagnosed rare conditions in Greece, but also to build a future for our national rare disease community. Therefore, not only it supports capacity building, Education and Patient Advocacy, but also promotes research in the field of rare disorders and ensures the transfer of knowledge, innovation and learning from abroad.
The Board and the founding members are all rare patients or carers and people with high integrity, trained by the European Academy of Patients (EUPATI) and the Academy of Patients of the European Organization for Rare Diseases (EURORDIS), with extensive experience in asserting patients' rights at both national and European level.
The number "95" was chosen as the distinctive title of the Organization in order to symbolize the percentage of rare diseases that don’t have an approved treatment, while the name "Greek Alliance’’ highlights the need for cooperation in order to improve the quality of life of people with rare diseases.