Exploring Current Health Policies on Rare Diseases in Greece: A Narrative Review

Background: Rare diseases are unique. Although they have low prevalence, they constitute a public health priority, affecting more than 350 million people worldwide. Patients are confronted with a complicated environment of sociomedical needs that require a strong public health response. Methods: European countries share allied multinational policies on rare diseases though inequities, delays in diagnosis, and differences between nations exist. Aiming to access the current Greek health policy, a thorough search on publicly published laws, governmental regulations, administrative information on orphan medical products, and associated actions was conducted. Regional health authorities' websites and relevant scientific webinars were extensively exploited and worked through. Results: Greece's national strategy for rare diseases includes creating a framework for screening, diagnosis, and treatment. The plan aligns with the EU recommendation to improve the visibility of rare diseases and ensure equal access to healthcare services. During the last 14 years, the Greek state has adopted the European definition and enacted targeted legislation so that, to date, 39 centers of expertise are certified and functioning, 3 disease-specific patient registries are actively operating, and 82 orphan drugs are reimbursed by the state. Conclusions: This analysis revealed gaps in core sectors: A national central patient registry is lacking, and interoperability between stakeholders can be further enriched and optimized, ensuring patient safety concerns. Health inequities for patients in remote areas should be addressed, and the orphan drug policy should be additionally improved. More research is needed to raise awareness and document patient-centered health policy tactics that drive wellness and treatment programs.