Greece "record holder" for rare diseases

Greece officially became a member of the European Reference Network for Rare Diseases, closing a significant gap in their management of patients by physicians.

European Reference Networks (ERN) are virtual and involve healthcare providers in Europe. The goal of the service is to combat complex or rare diseases, patients with which require highly specialized treatment and the application of accumulated knowledge and resources.

According to the European Union’s definition, a disease is considered rare if 5 out of 10,000 people in the Eurozone suffer from it. Rare diseases are mostly genetic in nature (autoimmune diseases, congenital malformations, etc.). They are life-threatening or cause permanent disability, 80% are genetic, and 50% occur in childhood.

Between 5,000 and 8,000 rare diseases affect the daily lives of about 30 million people in the EU, according to the European Commission. For example, in the field of oncology alone, there are 300 different types of rare cancers, and every year more than half a million people in Europe are diagnosed with one of them.

Many of those with rare or complex diseases do not have access to quality diagnostics and treatment. Often there is a lack of specialists and knowledge, because the number of patients with this disease is extremely small.

European reference networks and Greece

In order to make a greater contribution to the treatment of rare diseases for the benefit of patients, the European Reference Networks were formally established in 2017. They seek to improve patient diagnosis and access to treatment, and are designed to facilitate discussion of complex or rare diseases that require highly specialized treatment, the accumulation of knowledge and resources.

Until today, doctors and patients in our country have been deprived of this valuable “tool” as no Greek center has officially joined the networks, except for the University of Athens, which is a member of JARC (for rare cancers).

However, this gap has been definitively filled since since the beginning of the year Greece has joined the European Reference Network with 18 points. A total of 629 new units have joined the networks as of January 1, following the unanimous approval of the Council of ERN Member States. Thus, almost 1,500 units are currently listed on the ERN list (covering 27 states).

“Expanding the geographical coverage and listing of the ERN increases the access of patients with rare but complex diseases to highly specialized medical care,” the European Commission said.

The new 620 units are part of networks in 24 Member States and Norway (excluding Bulgaria, Malta and Luxembourg).

The largest number of new applicants, 43 in total, have joined the ERN RITA European Reference Network, which aims to improve care for patients with rare immune disorders. In addition, 38 new members will join EURACAN, a network that connects patients with rare severe adult cancers, and 36 new members will join ERN EuroBloodNet, a network for rare hematological diseases.

By country, Italy has the highest number of health facilities included in European reference networks (145), followed by Germany (84), Spain (68), and the fewest in Latvia and Slovenia (4), Estonia (3) and Cyprus (2). Greece is included as a new country that has ERN medical facilities (with 18 units).

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