In March 2025, the government issued decisions providing for the establishment of the National Registry of Patients with Rare Hematological Diseases and the National Registry for Rare Ophthalmological Diseases (Ministerial Decision No 11646/2025 and Joint Ministerial Decision No 11502/2025 respectively). It is expected that a Ministerial Decision will be signed soon for the creation of the National Registry for Rare Liver Diseases. The Ministry of Health intends to establish 21 more registries for rare diseases.
The registries will be implemented by the e-Government Center for Social Security in collaboration with the Ministry of Health. Their aim is to comprehensively record, manage and monitor all patients across Greece who have rare diseases. The expectation is that this detailed knowledge will provide the basis for the Ministry of Health to identify patients with rare diseases and develop specific health policies for them. Researchers will also have access to (anonymized) demographic data on patients, the type of disease, the characteristics of treatment as well as data of the medical unit or hospital department providing treatment and the treating physician. These data can be used in research to gather evidence on the prevalence of diseases, their distribution by age, the monitoring of outcomes, and on the effectiveness and safety of the treatments applied.