RARE DISEASES GREECE

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)

More about the Association

Announcements

OBJECTIVES & PILLARS OF ADVOCACY

Gathering the rare disease patient community
Collaborating for and coordinating actions aiming at equity
Advocating for the rights of patients and ensuring medical and social care for the most vulnerable groups of patients
Representing the Association's members in national, European, and international organizations

Dialogue with the State, participation in Policy-making procedures, and the planning of health State policies.
Development of National Patient Registries, Treatment Protocols and European Reference Centers / Networks (ERNs)
Ensuring equitable access to orphan drugs, innovative treatments, care, and cross boarder healthcare.
Participation, collaboration and dialogue with social and scientific partners.
Cooperating and participating in corresponding initiatives at regional, European, and international levels

Dissemination of reliable information and conducting scientific seminars and conferences.
Training to defend the rights of patients suffering from rare diseases.
Empowerment and training of the Association executives to promote public dialogue.
Promotion of Clinical Trials and Research Programs for the benefit of patients.
Cooperation with educational and research foundations and institutes in Greece and abroad.

BASIC PRINCIPLES OF OPERATION

BASIC PRINCIPLES OF OPERATION The Association maintains its independence from political, governmental, trade union, and financial bodies.

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

Each member of the Union maintains its independence

by respecting the Statute of the Union.

The Union adheres to the principles of sound fiscal management

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.

Rare diseases are

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.