The position of people living with rare diseases in every society is shaped by numerous aspects of life and work. In this regard, legal aspects are of great importance, including the implementation of regulations, legislation, legal procedures, as well as the overall functioning of institutions and organizations of various types. This primarily reflects the application of the principles of respect for human rights in relation to health.

The vulnerability of people living with rare diseases requires increased attention and protection defined by law, while in practice support is also provided in the exercise and protection of their rights.
The law provides certain benefits and facilitations in exercising healthcare and social rights. However, there are often significant obstacles and barriers that affected individuals face in accessing these rights. When a violation of rights occurs, or when legally prescribed obligations are not fulfilled, a disputed and irregular situation arises. In such cases, mechanisms for the protection of rights are initiated, which, depending on the nature of the dispute, may be judicial or non-judicial.

Important segments in understanding the legal aspects of the position of and treatment toward people living with rare diseases include the following:

Improving the rights of people living with rare diseases in Serbia

• Exercising the rights of people living with rare diseases, what those rights include, and how they are regulated (rare diseases, chronic conditions, diagnosis, therapy, treatment abroad, rehabilitation, prevention, social protection, disability rights, labor rights, the right to a dignified life, etc.)
• Violations of the rights of people living with rare diseases, including breaches of obligations by those responsible for their care and treatment (types of violations, different situations, levels of healthcare, administrative barriers, etc.)
• Protection of the rights of people living with rare diseases (relevant institutions, legal mechanisms, procedures, places and pathways for protection of rights, etc.)
• Forms
• Registration in the patient registry