The Association for the Fight Against Rare Diseases in Children “Život” held a round table on 26 September 2025 at the OPENS Center in Novi Sad, dedicated to the topic “Problems in the Provision of Healthcare for Patients with Rare Diseases During the Transition from Pediatric to Adult Care.” The round table was organized within a project implemented by the “Život” association with financial support from the European Union in Serbia. The project is led by the Citizens’ Association “Život” for the fight against rare diseases in children, with the support of the Initiative for Economic and Social Rights A11, the Transatlantic Foundation (German Marshall Fund), and the European Union in Serbia within the “EU for You” initiative.

This transition period often brings additional challenges for patients and their families – from interruptions in continuity of care, lack of coordination between physicians, to difficulties in accessing therapy and specialist examinations.

The aim of the round table was, through the exchange of experiences and proposals from different patient organizations, to identify key problems and formulate recommendations for improving practice and healthcare policy.

The transition from pediatric to adult healthcare is one of the most critical moments in the lives of young people with rare diseases. Without clear transition programs and intersectoral cooperation, patients and their families are left on their own during a period when they need support the most.

At the round table, we heard the experiences of patients who openly spoke about feelings of abandonment and “wandering” within the healthcare system during this process. Physicians also shared their experiences, and all agreed that they face the same challenges – a lack of structure and clear tools that would enable them to make the transition easier and safer for patients.

In other countries, such transition programs have existed for years – it is time for our patients to have them as well.

We thank all participants for the open discussions, sharing of experiences, and proposals. This is only the first step toward creating a system in which no young patient with a rare disease will remain “between two worlds” of healthcare.

The presence and contributions of all participants, in the form of experiences, practical examples, and proposed solutions, are of great importance for achieving the common goal – ensuring continuity and quality of healthcare for patients with rare diseases regardless of age.

Association “Život”

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