Even though Croatia does not have an official register of people suffering from rare diseases, it is estimated that there are around 200,000 people with rare conditions who in addition to adequate medical care also need psychosocial support, it was said on Rare Disease Day, marked on Tuesday.

Rare diseases are those that affect fewer than one in 2,000 people. According to data from the Eurordis rare disease association, there are more than 6,000 rare diseases affecting 30-40 million people in the European Union, with 50% of the patients being children.

“There is no official register of rare diseases in Croatia but it is estimated that around 200,000 people, mostly children, suffer from them,” said Mirela Sentija-Knezevic, assistant head of the City of Zagreb Department for Social Protection and Health.

Parents whose children come to Zagreb from other parts of the country for treatment can count on being provided with temporary accommodation in city-owned apartments, she said.

A member of the Governing Board of the Croatian Rare Disease Association, Jadranka Brozd, said that a large number of people suffering from rare diseases are at an age when they should be working and be socially active. However, diagnosing them is a slow process, she said.

“Also, for children who become adolescents there are no longer adequate doctors who would follow individual rare diseases and there is no adequate psychosocial support for those patients, which is what our association is working to make up for,” Brozd said, noting that there is no physiotherapy plan for any rare disease in Croatia.

Patients who suffer from rare diseases and their families have to deal with many problems, which is why a new national plan for rare diseases should be adopted, said the vice-president of the Croatian Rare Disease Association, Sanja Bajlo.