Rare diseases are no longer invisible: Law before parliament, Sarajevo Canton ready for systemic solutions

(Patria) - On the occasion of the International Day of Rare Diseases, observed on February 28, a professional meeting was held, organized by the Alliance for Rare Diseases of Bosnia and Herzegovina, dedicated to improving the position of people living with rare diseases.

During the meeting, it was stated that rare diseases, although affecting a small number of people individually, collectively represent a serious health and social challenge.

The long road to diagnosis, limited and uneven access to therapies, and the lack of systemic solutions are the daily reality for patients and their families.

It was particularly emphasized that rare diseases are not "rare" for those who live with them every day.

There are between 6,000 and 8,000 rare diagnoses in the world, more than 300 million people live with rare diseases, and most of these conditions begin in childhood and have a chronic, often life-threatening course.

The situation in the Federation of Bosnia and Herzegovina was also highlighted, where there is still no specific law or unified register of rare diseases, while therapies are often financed through various programs, without equal conditions for all patients.

The Minister of Health of Sarajevo Canton, Enis Hasanović, stated that the lives of patients with rare diseases must have the same value as any other life.

- The health system must not look for reasons why something cannot be done, but for ways how it can be done. Sarajevo Canton is ready to participate in co-financing models, but without a clear legal framework, we do not have the tools for systemic action.

Early detection of diseases and timely therapy are not a matter of luxury, but a basic right. Patient associations are our partners and have full support in the fight for sustainable solutions - emphasized Minister Hasanović.

It was concluded that the adoption of the Law on Rare Diseases is crucial for establishing a functional system that will ensure a register of rare diseases, stable and predictable financing, transparent procedures, and equal access to healthcare for all patients.