Rare Diseases Greece (RDG) is a non-profit association based in Athens, representing over 30 member organizations nationwide. It stands as the largest body advocating for individuals with rare diseases in Greece, participating in key committees and working groups, such as the Committee for Rare Diseases and the Pharmaceutical Expenditure Monitoring Committee of the Ministry of Health. RDG is also the official representative of Greece in international platforms, being a member of the European Organization for Rare Diseases (EURORDIS) and Rare Diseases International (RDI).
The association's primary objectives include uniting the rare disease patient community, collaborating to ensure equitable access to healthcare, advocating for patient rights, and representing its members in national and international organizations. RDG emphasizes the development of national patient registries, treatment protocols, and European Reference Centers, aiming to secure access to orphan drugs and innovative treatments. Additionally, it focuses on disseminating reliable information, conducting scientific seminars, and promoting clinical trials and research programs for the benefit of patients.
Rare Diseases Greece (RDG) also is from the few patient organizations in EU that invests and brings expertise in Artificial Intelligence (AI), Machine Learning (ML), and digital tools to support the rare disease community. By leveraging these technologies, RDG enhances patient journeys, facilitates data-driven research and advocasy, and improves diagnostic accuracy and treatment accessibility.
Additionally, RDG plays an active role in advocating for rare disease policies at the European Union level, collaborating with international organizations, policymakers, and research networks to influence regulatory frameworks and ensure better healthcare solutions for patients across Europe.
