The Human Rights Ombudsman Peter Svetina is very pleased to conclude the discussions on the issue of rare diseases, because, with the establishment of the Register of Rare Non-Malignant Diseases and the preparation of the Work Plan in the field of rare diseases for the period 2021–2030, all the recommendations he made to the Ministry of Health have been taken into account.

According to rough estimates, there are between 120 and 160 thousand people with various forms of rare diseases in Slovenia. For years the Ombudsman has been monitoring the problems they experience in exercising their rights, which representatives of patients' rights and members of various associations of patients with rare diseases bring to his attention. Ombudsman Svetina emphasises that everyone must have the right to equal, appropriate, high-quality and safe medical care, which is why he has constantly worked to make it easier for patients in already difficult situations to exercise their rights with clearly defined rules and measures and with humane approaches.

As part of the consideration of initiatives, since 2019 he has been actively monitoring developments in this area and demanding changes. He primarily wanted to ascertain the situation is in the field of rare diseases, whether the Register of Rare Non-Malignant Diseases has now been established, how the National Work Plan in the field of rare diseases is being implemented, how palliative care for children with rare diseases is regulated, what the commitments, plans, and strategy of the Ministry of Health are in this area, and he was also interested in the activities of the Ministry of Health in relation to rare diseases.

Throughout the years, the Ombudsman has continuously checked the progress of the preparation of the Register of Rare Non-Malignant Diseases and the Work Plan in the field of rare diseases for the period 2021–2030, and made recommendations to the Ministry of Health. Since the field of rare diseases is one of the fastest-developing branches of medicine and, according to the Ministry, it is difficult to meet all the needs for treatment and technological advancement, progress has been slower than the Ombudsman expected, and the period of the Covid-19 pandemic also contributed to the long road to solutions.

The Ombudsman again asked the Ministry about the establishment of the register in February this year. He welcomed the information that the register had been established after many years and that entry of the first patients had already begun. The Ombudsman is also pleased that the many years of work he monitored within the framework of his responsibilities have borne fruit and that this will enable more effective monitoring and, at the same time, improved medical care of patients.

You can read more about the issue here.