Almost 400,000 People in Serbia Suffer from a Rare Disease

These individuals face various challenges daily — from delayed diagnoses and significant discrimination to excessive bureaucracy. Fear and uncertainty are the primary emotions experienced by parents and children when a rare disease is diagnosed.

There is a recognized need for systemic solutions and support for those suffering from little-known illnesses.

The problems patients face are numerous: delays in diagnosis, lack of access to appropriate treatment, discrimination, psychological barriers, and insufficient legal provisions protecting patient rights.

"Often, there are no specific medications for certain diseases, and patients are treated with drugs intended for other conditions. So, we still have work to do. It is especially necessary to improve the social protection system. We recently reached out to the relevant ministry to highlight the severe issues that arise after the age of 26 — that is, after completing the educational cycle," emphasized Brankica Jankovic, Commissioner for the Protection of Equality.

A 42-month-long project will be carried out, aimed at empowering patients with rare diseases and more actively involving them in the healthcare system.

The project is dedicated to strengthening the role of patients in shaping health policies, improving access to healthcare, enhancing health literacy, and providing better psychological support.

"The European Union believes that every citizen deserves equal access to quality healthcare and support. That’s precisely why we are committed to funding this 42-month project, which will lead to alignment with EU regulations. A special focus is placed on supporting vulnerable groups," said Nikola Bertolini, Head of the Cooperation Sector of the EU Delegation in Serbia.

Although much progress has been made, there is still room for improvement. Continued work is needed on improving the legal framework, procedures, and rules, as well as on making healthcare more available and accessible — whether in urban or rural areas.

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