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Press Release 

Halandri, February 27^th, 2026 – On the occasion of World Rare Disease Day, the Hellenic Association of Pharmaceutical Companies (SFEE) and the Rare Diseases Platform highlight the urgent need for comprehensive health policies that ensure timely diagnosis, equitable access to care and innovative therapies, as well as overall support for patients and their families.

Behind every “rare” diagnosis are individuals and families who face daily challenges often invisible to society. Globally, over 300 million people live with a rare disease, while more than 6,500 clinically recognized rare diseases have been documented. In Europe, rare diseases are estimated to affect 6–8% of the population, translating to approximately 350,000 to 600,000 people in Greece.

Most rare diseases manifest early in life, often leading to severe disabilities and significantly impacting not only the individuals affected but also their families and healthcare systems. Despite advances in medical science, patients continue to face serious obstacles: the average time to achieve an accurate diagnosis can take nearly five years, and less than 5% of rare diseases have approved treatment.

Rare diseases are not only a medical issue, but they also represent a multidimensional social, psychological, and economic burden for patients, families, and healthcare systems. Addressing them requires coordinated health policies and collaboration among all stakeholders.

Addressing these challenges—and the opportunities that rare diseases present—through the lens of new technologies and the growing expectation for equitable access to therapeutic options and medical care, requires the development of a national strategy for holistic management of rare diseases in Greece. Collaboration among all partners, the State, patient associations, the medical and academic community, and the pharmaceutical industry—is essential for optimal care delivery within an effective healthcare system.

SFEE actively supports the adoption of a comprehensive national strategy for rare diseases. In this context, the SFEE Platform for Rare Diseases has prepared a policy document entitled: “The Necessity of a Comprehensive Strategy for the Management and Treatment of Rare Diseases through the Creation and Implementation of a National Action Plan”, outlining the key pillars and priorities necessary for developing a coherent national policy for rare disease management.

Taking concrete initiatives and co-developing policies that address the unmet needs of people living with rare diseases can shape a sustainable and equitable healthcare system for the benefit of patients, their families, and society as a whole.

As SFEE’s General Manager, Mr. Michael Himonas, notes: “We invest in the forefront of innovation, developing gene, cell, and personalized therapies to address unmet medical needs and ensure that patients with rare diseases have access to a better quality of life.”

References:

1. Orphanet nomenclature pack description (files for coding) . Available at: https://www.orpha.net/pdfs/orphacom/cahiers/docs/GB/OrphanetNomenclaturePackDescription.pdf
2. Nguengang Wakap, S., Lambert, D.M., Olry, A., et al., 2020, Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 28, 165–173. Available at: https://doi.org/10.1038/s41431-019-0508-0
3. Source, ESAEA: https://rarediseasesgreece.gr/giati-mas-afora/
4. Faye F, Crocione C, Anido de Peña R, et al., 2024, Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey. Eur J Hum Genet. 32(9):1116–26. Available at: https://doi.org/10.1038/s41431-024-01604-z
5. Kaufmann, P., Pariser, A.R., & Austin, C., 2018, From scientific discovery to treatments for rare diseases – the view from the National Center for Advancing Translational Sciences – Office of Rare Diseases Research. Orphanet J Rare Dis 13, 196. Available at: https://doi.org/10.1186/s13023-018-0936-x