The problems and difficulties faced by patients with rare diseases and their families are very specific and concern the health system and the social protection system, and in the period of the COVID crisis, they were even more pronounced. The development of necessary capacities, improvement of the system, and establishment of efficient procedures for sending patients abroad must be such as to provide the most optimal solution for each individual case, said Commissioner for the Protection of Equality, Brankica Janković, at the regional conference on rare diseases “Caring for the rare: the way forward”.
The Commissioner said that she held several meetings with representatives of the NORBS association to discuss the problems and difficulties faced by this particularly vulnerable social group, recalling the jointly successfully completed initiative to assess the constitutionality and legality of the Law on Financial Support to Families with Children, and the big step forward in exercising the right to the allowance for assistance and care of another person, which was thus achieved.
Janković said that the announcement of the construction of the National Center for Early Childhood Development and Inclusion “Decoration of the World”, announced by Tamara Vučić, which will provide a comprehensive approach to all issues and interventions related to early childhood development, is of great importance for children with discovered developmental delays. She pointed out that the Commissioner for the Protection of Equality will continue, together with organizations and associations, to work on ensuring the availability of health services, medicines, technical aids, and support from the social protection system for patients with rare diseases. The Commissioner invited parents, associations, and citizens to continue to address the institution whenever they face discrimination, because that is the best way for the institution to act efficiently.