The Association for Rare Diseases in Children “ŽIVOT (LIFE)”, a citizens’ organization dedicated to the fight against rare diseases in children, conducted, in cooperation with Ninamedia Group Research, a study on the position of people living with rare diseases in Serbia—from the perspective of those who experience the system every day: patients and their families.

What did the results tell us?

• Nearly 70% of respondents experienced serious difficulties in obtaining a diagnosis
• More than 40% did not receive reimbursement for treatment costs
• Over 70% have no access to psychosocial support
• More than 60% have no access to rehabilitation services
• The majority of families report that treatment costs seriously threaten their financial stability

The research clearly shows: the system exists, but it is not equally accessible to everyone. Systemic changes are needed, greater availability of therapies, more specialists, and stronger involvement of patients and families in decision-making processes.

The study was conducted during October and November 2025, on a sample of 92 respondents—parents, family members, and individuals living with rare diseases.

This is not just statistics. These are real lives.

Together, we continue to fight for a dignified, equal, and fair system for all people living with rare diseases.