Rare disease affects 50,000 Cypriots, research shows

More than 50,000 Cypriots live with a rare disease, recent research by the Cyprus Institute of Neurology and Genetics (CING) and Karaiskakio Foundation has shown.

Ahead of World Rare Disease Day, which is celebrated on the last day of February, the two institutions presented their findings on how rare diseases affect the Cypriot population, indicating they might not be as rare as originally thought.

A disease is considered rare if it affects approximately 3.5 per cent – 5.9 per cent of the world’s population. In total, more than 300 million people worldwide have been diagnosed with a rare disease and to date more than 6,000 rare diseases have been discovered.

Rare diseases are chronic, progressive and often life-threatening, as there is often no effective treatment.

In addition, they are defined by a variety of symptoms and abnormalities, which not only differ between diseases, but also between patients suffering from the same disease.

Research is the only way to gain knowledge about rare diseases and the best way to develop therapeutic methods, the Institute of Neurology and Genetics said in its announcement, adding that research is valuable in contributing to the medical data of Cyprus.

The Institute also said it offers high quality services to patients suffering from rare diseases, aiming at improving their quality of life.

In its own announcement, Karaiskakio said that in the last two years research conducted by hematologists, oncologists and geneticists collected insight on rare diseases and helped physicians diagnose 150 patients, 99 of whom would have remained undiagnosed through conventional methods.

Established in 2008 by the European Organisation for Rare Diseases (EURORDIS), World Rare Disease Day has been celebrated on the last day of February to raise awareness about rare diseases and their multiple and multidimensional consequences in the lives of patients.

In this context, important buildings in EU member states are lit in the campaign colours (blue, pink and purple).

In Cyprus events will be organised by the Cyprus Alliance for Rare Diseases (Card) which has under its umbrella 19 patient organisations and 260 individual patients with rare diseases.

Among others, the Presidential Palace, the Ministry of Health and the building of the Cyprus Institute of Neurology and Genetics will be illuminated.

Due to the fact that the last day of February is Sunday, the lighting events will take place on Friday, February 26 this year.

While rare diseases are considered to concern a very small part of the population, they affect between six and eight per cent of the EU’s population, which translates to over 30 million people.

Research from both institutions showed that in Cyprus they affect about 60,000 people, half of whom are children.