RARE DISEASES GREECE service August 24, 2020

Why do rare diseases concern me?

500.000+

Greek Patients

6.000+

Rare Diseases

95%

Without Medical Treatment

50%

Of the Patients are Children

30%

Don't make it to their 5th Birthday

35%

Infant Mortality

About Rare Diseases Greece / RDG

Rare Diseases Greece / RDG is a non-profit association based in Athens covering the entire Greek territory, with 30 members – associations, unions, and civic, non-profit organizations representing patients with rare diseases throughout the country.

  • RDG is the largest organization representing patients with rare diseases in Greece.
  • RDG participates in committees and working groups, such as the Committee for Rare Diseases, the Working Group for Rare Diseases for Rare Disease Patient Registry and Treatment Protocols, and the Pharmaceutical Expenditure Monitoring Committee of the Ministry of Health.
  • RDG is the official representative body of Greece abroad, a member of the European Organization for Rare Diseases (EURORDIS)
OBJECTIVES & PILLARS OF ADVOCACY
BASIC PRINCIPLES OF OPERATION

It is based on voluntary participation, democracy, transparency, and accountability in decision-making and action implementation processes.

by respecting the Statute of the Union.

which specializes in the principles of economy, efficiency and effectiveness, responsibility and accountability, transparency, and honesty, as defined under Article 33 of Law 4270/2014.

those recognized and included with ORPHACODE in the “ORPHANET Catalog of Rare Disease,” as it is amended and supplemented each time and valid in the European Union as a reference field for Rare Diseases and recognized by the Greek State with the applicable Law 4213/2013.

TOGETHER WE CAN
MEMBERS OF RDG

Rare Disease Day

Watch the video
WE ARE GRATEFUL TO OUR
SUPPORTERS