National plan for rare diseases: Greece - EURORDIS-Rare Diseases Europe

Διαβάστε το κείμενο αυτού του ιστότοπου στα ελληνικά (Read this page in Greek)

The Greek Ministry of Health established the National Committee of Rare Diseases in 2022 to oversee the review of newly proposed Centres of Excellence for rare diseases and to develop the National Plan for Rare Diseases.

This Committee consists of healthcare providers and academics, supported by a representative of Rare Diseases Greece (RDG), the national alliance of rare disease patient organisations. The Committee contributed to drafting the proposed Action Plan which was submitted to the Ministry of Health at the end of 2023. No further actions were taken by the Ministry to date.

Key highlights of the Greek Rare Disease Strategy

Reliable and validated information on rare diseases in Greece

The following sources are central and highlighted in the National Strategy:

500 rare diseases have been recorded in Greece and their Orphanet translation is under development.
RDG is supporting the development, the daily activities and translations of Orphanet, under the management of the Agency for Quality Assurance in Health S.A (ODIPY).
Sources and information are available on the RDG website.

Expert advice

There are seven Greek centres that are members of 12 European Reference Networks (ERNs) for rare diseases (out of 24 in total). See ERN members per country here.
The updated information on the expert centres for rare diseases can be found on the Rare Diseases Map Greece.

National rare disease healthcare pathways

There is no national rare disease healthcare pathway beyond the ERNs.

National registry

Currently, there is not one single national registry for rare diseases in Greece.

However, in the last two years, a working group for a RD registry has been established by the Greek Ministry of Health, after a policy campaign by RDG and the rare disease community. This resulted in a consensus on the development of 24 RD registries following the 24 ERNs clusters and one for the undiagnosed.

In early 2025, the first three rare disease registries were agreed and mandated to a developer. The future for these registries is uncertain, since there is no National Plan.

Scientific research

There are no specific research programmes for rare diseases in Greece.
EU-level research and funding are coordinated through the ERDERA project.

The role of Rare Diseases Greece

Rare Diseases Greece is highly involved in the implementation of the National Strategy for Rare Diseases and a driving force for the development of the National Plan for rare diseases and all other relevant policies.

RDG is a non-profit association based in Athens covering the entire Greek territory, with 30+ members – associations, unions, and civic, non-profit organisations representing patients with rare diseases throughout the country. RDG is the largest organisation representing patients living with rare diseases in Greece, participating in committees and working groups, such as the National Committee of Rare Diseases, the Working Group for Rare Diseases Patient Registry and Treatment Protocols, and the Pharmaceutical Expenditure Monitoring Committee of the Ministry of Health.

RDG represents the Greek rare disease community abroad and is a member of the European Organisation for Rare Diseases (EURORDIS) and Rare Diseases International (RDI).

RDG organises the International Conference for Rare Diseases in Athens and develops a series of tools for the RD patient community:

1. Rare Diseases Map Greece – RDG MAP – V1

This interactive tool addresses information gaps on rare diseases. It helps users find national expert centres, monitoring centres or patient organisations by region, and offers structured and reliable information to patients, healthcare professionals and associations. It also includes disease names (Greek/English), synonyms, ORPHAcode, ICD-10/11, Orphanet links, ERNs, PubMed and clinical trial links.

Phase 1 includes the registration of the first 500 rare diseases, the compilation and update of expert centres and specialised monitoring units as well as mapping related patient organisations and disease correlations.

Phase 2 will expand the Map with more diseases and features. A communication strategy is also being developed for its public launch.

2. Guide to Rights and Social Benefits for People Living with Rare Diseases

This Guide, recently presented to the rare disease community, was developed by experienced social scientists with the support of the Ministry of Health and Organisation of Welfare Benefits and Social Solidarity (OPEKA). It outlines the legal framework, patient rights, and available social benefits to help patients access all entitled resources, thereby reducing inequalities and social exclusion.

3. Access Guide to Therapies and Orphan Drugs for Rare Diseases

Created with the support of the Ministry of Health, National Organisation for Medicines (EOF), National Organisation for Health Care Services (EOPYY), Institute of Pharmaceutical Research & Technology (IFET) and the Hellenic Market Access Association (ELEMA), the Guide clarifies the procedures and pathways for accessing therapies and orphan drugs in Greece.

4. Study of Unmet Needs for Rare Diseases in Greece – “Unmet Needs”

Two unique surveys were conducted with IQVIA Hellas, aiming to:

support policy proposals and advocacy with scientific data;
provide tools and data for patient organisations;
help shape strategic priorities for Rare Diseases Greece;
develop targeted, personalised support programmes;
ensure international publications of findings to boost credibility;

The Organisational Needs Survey explored medical care needs, service availability, infrastructure, finances, staffing and expertise.

The Patient Needs Survey assessed demographics, unmet medical needs (diagnosis, monitoring centres, doctor-patient relations, treatment), and socio-economic needs (exclusion, benefits, financial burden).

Relevant resources

National contact

Rare Diseases Greece
http://www.rarediseasesgreece.com
http://www.rarediseasesgreece.com
info@rarediseasesgreece.gr