Exercise of the Rights of People Living with Rare Diseases
Exercise of the Rights of People Living with Rare Diseases
The rights of people living with rare diseases, their scope, and the way they are regulated include areas such as rare diseases, chronic conditions, diagnosis, therapy, treatment abroad, rehabilitation, prevention, social protection, disability rights, labor rights, the right to a dignified life, and more.
Violations of the Rights of People Living with Rare Diseases
Violations of the rights of people living with rare diseases refer to breaches of obligations by those responsible for their care and treatment, including different types of violations, situations, levels of healthcare, administrative barriers, and related issues.
Protection of the Rights of People Living with Rare Diseases
Protection mechanisms for people living with rare diseases include relevant institutions, legal mechanisms, procedures, places for protection of rights, and available legal pathways.
- CRIMINAL COMPLAINT
- REQUEST for therapy to the RFZO Commission for Rare Disease Treatment
- REQUEST to the Budget Fund
- COMPLAINT to the director of a healthcare institution
- COMPLAINT to the RFZO branch office
- COMPLAINT to the work process manager
- COMPLAINT to the RFZO branch office regarding medicine procurement
- COMPLAINT to the local government health council
- COMPLAINT to a healthcare institution regarding Registry enrollment
- APPLICATION for the legal aid hotline
- LAWSUIT FOR DAMAGES
- REQUEST for Registry enrollment
Forms
FORM for one-time financial assistance payment
FORM for healthcare institution medicine procurement for a patient
FORM for vouchers for purchasing medicines and medical supplies
FORM for vouchers for rehabilitation and recreation
PIO REQUEST for rehabilitation
PIO REQUEST for bodily impairment
PIO REQUEST for assistance and care by another person
CERTIFICATE of inability to provide services
PROPOSAL for diagnostics abroad
PROPOSAL for engaging foreign experts
APPLICATION for referral to rehabilitation
COMPLAINT to the Commissioner for Information of Public Importance
COMPLAINT to the Commissioner for Equality Protection
LAWSUIT against the Commissioner for Information REQUEST to the Commissioner for Information
Request for the Interdepartmental Commission – Form 1
REQUEST to the National Employment Service for financial compensation related to employment
REQUEST to the Commissioner for Information
REQUEST to RFZO for the right to therapy
REQUEST to RFZO for reimbursement of costs
REQUEST to the SCHOOL ADMINISTRATION
REQUEST / REFERRAL for treatment abroad
REQUEST for a certificate from the National Employment Service for employment purposes
REQUEST for a certificate from the National Employment Service for temporary financial compensation
Registry Enrollment
HOW TO REGISTER IN THE PATIENT REGISTRY FOR PEOPLE LIVING WITH RARE DISEASES
In our daily work, patients and their families increasingly contact us with the same question – whom should they contact in order to be entered into the Rare Disease Registry? Although the right to registration is clearly defined, practice has shown that many physicians do not have sufficient information about the procedure itself, the responsible institutions, and the steps that need to be taken.
Particularly concerning is the fact that not only patients, but also physicians contact us. Healthcare professionals from different parts of Serbia seek precise guidance on how to register their patients in the Registry, where the documentation should be submitted, and how the procedure is initiated. This situation points to insufficient awareness and the need for clearer communication between competent institutions and the healthcare system.
The situation is especially difficult in smaller communities, where information is even less accessible. Patients living outside major centers often have no one to turn to and are unaware of their rights or how to exercise them. In such circumstances, the right to Registry enrollment remains only a formal possibility, without real accessibility.
The Rare Disease Registry, maintained by the Institute of Public Health of Serbia, plays an extremely important role. It is not merely an administrative database, but the foundation for healthcare planning, therapy accessibility, development of support programs, and improvement of the quality of life for people living with rare diseases. Enrollment in the Registry means visibility within the system, and visibility is the first step toward exercising one’s rights.
Precisely because of the many uncertainties and obstacles faced by patients and physicians, we decided to take a concrete step. We prepared request forms for Registry enrollment, as well as a complaint form for situations in which a patient has not been enabled to exercise their right to registration. The purpose of these forms is to make the procedure clearer, more accessible, and simpler, especially for those who do not have institutional support or legal assistance.
We believe that rights must not depend on place of residence, an individual’s level of information, or personal resourcefulness. Our obligation is to support patients, but also to point out the systemic barriers that must be removed. Information is the first and most important step toward exercising rights — and it is our responsibility to make it accessible to everyone.
The magazine “Word for Life” remains a platform where we will continue to address topics such as these, because only through joint efforts can we ensure that the rights of people living with rare diseases do not remain merely words on paper, but become a reality in everyday life.
