The Wife of the President, Elizabeta Gjorgievska, attended and addressed the panel discussion dedicated to the Rare Disease Day, organized by the National Alliance for Rare Diseases of Macedonia – NARDM.
Pointing out that the opportunity to speak about the problem of rare diseases means to refer to the daily struggle, concerns, psychosocial problems faced by patients with rare diseases, but also their families, their loved ones, the President’s Wife said that this small brave community fights with dignity all the health challenges that rare diseases bring, but also other circumstances that are significant.
“Namely, in addition to appropriate treatment and health care, the social effect, acceptance from the environment, mental state and so on are also essential. It is crucial that in addition to the necessary health care, which in itself is complex and with huge financial implications, as a community, as a society, it is necessary to offer psychological support, to offer warmth, care and love”, Ms. Gjorgievska stressed.
Ms. Gjorgievska said that she believes that it is events like today’s that, first of all, result in sensitization of the general public. She added that solidarity, empathy is part of human being and human nature and we should not suppress and marginalize them, but on the contrary, we should develop them and consciously work on them, especially among the youngest.
“I would like to use this opportunity to once again acknowledge your courage, but also to call on to work on removing all obstacles in the process of treatment, assistance, socialization of our fellow citizens with rare diseases and their full inclusion in the social, cultural, political and economic life”, the President’s Wife said.
The Minister of Health, Ilir Demiri, also addressed the event, and the panel discussion was attended by representatives of associations of patients with rare diseases, patients and family members, doctors, members of the Commission for Rare Diseases, representatives of several line ministries and the Health Insurance Fund.
The panel participants discussed the current situation of people with rare diseases and their families, the needs for systemic solutions through the adoption of a Strategy for rare diseases with a plan for action in the areas of health, labor and social policy and education, as well as a budget for the implementation of the planned measures and activities.
