The Committee on Petitions, Human Rights and Equal Opportunities held a debate on children with rare diseases and the hardships of their families on 19 September 2025. Deputy Ombudsman Dr. Dijana Možina Zupanc highlighted the importance of comprehensive regulation of the field of rare diseases in children. She stressed that this is one of the most sensitive areas of human rights protection, as behind every number stands a child, a family, and their health and dignity. According to her, the way in which we as a society respond to the needs of patients with rare diseases is a test of solidarity, compassion and commitment to equality.

The Human Rights Ombudsman has been monitoring this field for years, persistently drawing attention to the need to establish a unified national Register of Rare Diseases. After years of efforts by stakeholders, the Ministry of Health announced in February 2024 that the register had been established and that the first patients had already been entered into it. The register will enable systematic data collection, health care planning, and the development of personalised therapies, which represents a significant breakthrough for patients and their families.

However, there are still challenges. Many families still face a long road to diagnosis, a lack of information, and limited access to modern therapies and experts. The Ombudsman specifically drew attention to the need to relieve parents of the burden of enforcing the rights of children whose health is not expected to improve, and to the urgency of developing effective palliative care for children.

"The establishment of the Registry is only the first step. Now, it is necessary to ensure its comprehensive use and equal access to innovative therapies, and develop a system of psychosocial support for families. Our duty is to ease the burden of the disease for children and their parents and provide them with dignity, security, and hope," concluded Dr. Možina Zupanc.

The Human Rights Ombudsman will continue to address this sensitive area, draw attention to shortcomings, and encourage stakeholders to find comprehensive solutions, as children with rare diseases and their families deserve timely, high-quality, and comprehensive health care.