Assistant Commissioners for the Protection of Equality Mirjana Kecman and Tatjana Prijić participated in the round table held in Novi Sad – “Rare diseases, but not rare rights,” organized by the association Hrabriša – Lil’ Brave One, within the framework of the public advocacy campaign of the same name aimed at improving the exercise of rights within the social protection system.
In addition to competent institutions, the round table was attended by parents of children with rare diseases, representatives of civil society organizations, as well as interested citizens, who actively participated in the discussion and asked questions related to procedures and practical experiences in exercising rights in the field of social protection.
During the round table, the most common problems in the implementation of applicable regulations, inconsistent practice, as well as the need for better information of families of children with rare diseases about the rights to which they are entitled were highlighted. Participants emphasized that exercising the right to the allowance for assistance and care by another person is one of the most important rights within the social protection system. This material benefit is particularly significant in view of the increased costs that care and assistance entail. In addition, exercising this right does not represent only financial support, but also contributes to the sense of security, stability, and social inclusion of persons suffering from rare diseases. The importance of addressing the institution of the Commissioner was also emphasized, as concrete experiences and personal stories of parents are key for the measures and initiatives of the Commissioner to be effective, as was the case with the recommendations of measures issued by this body to all preschool institutions regarding priority enrollment and ensuring the application of life-sustaining therapy during the stay of children with a rare/neurotransmitter/chronic non-communicable disease in kindergartens.
The association Hrabriša stated that the conclusions from the round table will be used as a basis for further activities within the campaign “Rare diseases, but not rare rights,” with the aim of improving practice and strengthening systemic support for families living with rare diseases, and further cooperation and support of this body in the implementation of these activities was agreed with the institution of the Commissioner.
The round table was moderated by Ivana Badnjarević, President of the association Hrabriša, and the speakers included Milana Mitrović Kovačević, member of the legal team of the association Hrabriša, Vanja Kovačević, member of the legal team of the association Hrabriša, Natalija Borkov, Secretary of the Center for Social Work of the City of Novi Sad, and Mirjana Kecman, Assistant Commissioner for the Protection of Equality.
