Today we visited NORBS – National Organization for Rare Diseases of Serbia to discuss their project “Together for Rares”, which is supported by the “Public Advocacy Network” grant. The project aims to improve the position and quality of life of people suffering from rare diseases and their families.
Through an advocacy initiative, NORBS strives to influence the implementation of the National Program for Rare Diseases in the Republic of Serbia from 2020-2022. In this way, they directly contribute to increasing the responsibility of the Ministry of Health, the Institute for Public Health Batut, the Ministry of Labour, Employment, Veterans and Social Affairs and RFZO. The expected outcome of this initiative is that people suffering from rare diseases can realize their rights, which have been denied to them until now, i.e. to be recognized in the health and social protection systems, as well as in all other areas of social life.
Rare diseases are not only accompanied by a number of serious health problems, since they are chronic, progressive, degenerative, but also by a number of social, psychological and emotional problems. The specificity is that people with rare diseases wait 7 years for a diagnosis, for 95% of rare rare diseases there is no therapy, and for those for which therapy exists (5%), the therapies are expensive and require procurement from the state budget. It is estimated that 5% of a certain population has one of over 7000 rare diseases, it is estimated that around 350,000 people in Serbia live with a rare disease. This network of organizations gathers 33 associations and about 150 individual members.
When it comes to cooperation with ACT, NORBS representatives pointed out that the training they received in the segment of strategic planning and clearly defining the goals they want to achieve, as well as networking and cooperation with other organizations, meant the most to them. Through the process of building their own capacities, they realized that they should also work on an internal communication strategy within the network.content_copyshare