Until about twenty years ago, little was known about rare diseases, and even less about what needed to be done to improve the situation of people living with them or to prevent such conditions in advance. That is why it is most important to hear the voices of those who deal with rare diseases every day, as well as the voices of organizations that bring together people facing the same or similar problems, emphasized Commissioner for the Protection of Equality, Brankica Janković, in her opening address at the “Together for the Rare – Introductory Conference,” organized by the National Organization for Rare Diseases of Serbia (NORBS).

The Commissioner has cooperated with these organizations for many years, and our numerous recommendations and initiatives have, we hope, contributed to improving the position of persons with rare diseases. It is extremely important that the achieved standards and the level of realized rights are not diminished, but rather increased day by day.

Along with sensitizing staff working with patients, solidarity, and trust, it is important to protect those living with rare diseases from discrimination and to ensure that they and their families receive the necessary health, psychological, social, and all other forms of support. There is still work ahead in improving the legal framework, health literacy, procedures, rules, and clear guidelines, as well as ensuring the availability and accessibility of health and social care, regardless of whether it is in an urban or rural area, Janković emphasized.