Research and analysis of the legal and social status of the patients with rare diseases

Within the project “Equitable Policies and Services for Rare Disease Patients“, funded by European Union, Association of Lawyers for Medical and Health Law of Serbia-SUPRAM, National Organisation for Rare Diseases of Serbia-NORBS and Institute of Molecular Genetics and Genetic Engineering-IMGGI are undertaking research on the legal and social status of the patients with rare diseases and their family members. So far, six focus groups were held with the: patients with rare diseases recognised in the legal regulation, patients with muscular dystrophy, patients with rare diseases which are treated with expensive medications, patients with ultra rare diseases, patients without diagnosis and patients with rare malignant tumors. Focus groups included patients with rare diseases and family members if patients were minors. Research results will be used as the basis for the analysis and the proposals of the policy in this field. Research will be conducted by the interdisciplinary team of SUPRAM and IMGGE experts.