Ένωση Σπανίων Ασθενών Ελλάδος

Rare Diseases Greece (E. S. A.

E. ) is an Athens-based nonprofit association representing people affected by rare diseases throughout Greece. It brings together patient associations, societies and nonprofit organizations, giving the rare-disease community a collective voice in national and international forums.

The association advocates for patients’ rights and equitable access to diagnosis, healthcare, orphan medicines, innovative treatments and cross-border care. It works with public authorities on health policy and participates in committees and working groups, including those concerned with rare diseases, patient registries and pharmaceutical expenditure. Its activities also promote national patient registries, treatment protocols, European Reference Networks, clinical studies and research programs.

For patients, families and member organizations, E. S. A.

E. provides information and practical resources, including guides to access and patient rights, a rare-disease map, and AI-supported research and information tools. It also supports education, seminars, conferences and community collaboration.

The association describes its work as independent, voluntary and guided by democratic decision-making, transparency and accountability. E. S.

A. E. represents Greece within Rare Diseases International and EURORDIS, the European Organisation for Rare Diseases