The International Day of Rare Diseases was marked also at a round table entitled “I often think of you”, organized by the National Organization for Rare Diseases, NORBS, and attended by the Assistant Commissioner, Mirjana Kecman. At the gathering, it was noted that in the last ten years, significant progress has been made in the recognition, diagnosis, as well as availability of various types of therapy and support for those suffering from rare diseases. It is estimated that there are close to 500,000 of them, although only 3,600 have been entered into the register so far.<\/p>\n
After the gathering, Kecman held a meeting with Biljana \u0110or\u0111evi\u0107 from NORBS and Ivana Badnjanovi\u0107 from the Hrabri\u0161a association, with whom she discussed the continuation of cooperation and joint work on further initiatives to improve the position of people suffering from rare diseases. At the meeting, it was assessed that in the last year, the visibility of this topic has increased, and significantly more funds have been allocated, but considering the specificity of rare diseases, a lot more needs to be done so that those suffering from these diseases and their family members receive adequate support. To achieve this, the needs of people suffering from rare diseases must be recognized in the social protection and education system, and the necessary infrastructure must be provided, that is, the architectural barriers should be removed, as the institution of the Commissioner has already pointed out.<\/p>\n\n ","protected":false},"excerpt":{"rendered":"
The International Day of Rare Diseases was marked also at a round table entitled “I often think of you”, organized by the National Organization for Rare Diseases, NORBS, and attended by the Assistant Commissioner, Mirjana Kecman. At the gathering, it was noted that in the last ten years, significant progress has been made in the…<\/p>\n","protected":false},"author":17,"featured_media":53320,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[],"class_list":["post-53348","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"yoast_head":"\n