The Wife of the President of the Republic of North Macedonia, Elizabeta Gjorgievska, addressed today the event marking the Rare Disease Day – February 28, which aims to raise awareness of rare diseases in a wide international campaign.
Gjorgievska said that we all have not only civil, but also moral and human duty to continue to help people with rare diseases in their full integration into society.
“Patients with rare diseases in North Macedonia and their families deserve justice in terms of health and social services. This means removing barriers that prevent their full participation in society. If we really stand for social justice, equality and humanity in the Macedonian society, then the rare diseases can be a test for our sincerity and commitment. And, with that, we will fulfill part of the 2030 Agenda of the United Nations”, Gjorgievska said in her address.
Gjorgievska pointed out that progress has been made in this area in the country, emphasizing the role of health professionals, parents and citizens’ associations for rare diseases.
“Thanks to your efforts, a register for rare diseases has been drafted. The Rare Disease Program of the Ministry of Health is regularly expanded. The Health Insurance Fund covers multiple medications, tests and refunds for nutritional products for people with rare diseases. But there are still unresolved issues. The Strategy for Rare Diseases, which is necessary for the systematic inclusion of these diseases in the new legal solutions, has not been adopted yet”, Gjorgievska said.
She pointed out that, unfortunately, the low level of public awareness of these conditions increases the risk of social exclusion and discrimination, and stressed that the disease is not and must not be a cause of isolation, stigmatization and marginalization.
“On the contrary, the disease is a condition that calls us to empathy, help and solidarity. Even if there is no cure for the body, this approach is a cure for the wounds of the soul, because patients and their families feel that they are heard, respected and supported by society and institutions”, Gjorgievska added in her address.
The President’s Wife highlighted the recently adopted UN General Assembly resolution on the challenges of people with rare diseases and their families.
“The purpose of the Resolution is to help them in their fight for universal and equal access to quality health services with a reduced financial burden. The United Nations calls on states to ensure equal inclusion of these persons in social, cultural, political and economic life. The Resolution encourages member-states to develop national strategies and systematically integrate the issue of rare diseases into their development priorities”, Gjorgievska said in her address.
The event, organized by the National Alliance for Rare Diseases and the Association of Citizens for Rare Diseases “Life with Challenges”, was addressed by the Minister of Health, specialist doctors and representatives of civil society organizations. The participants shared their opinions on what has been achieved in North Macedonia in the field of rare diseases and what should be done in the future in order to support and improve the lives of people with rare diseases and their families.
On the occasion of the Rare Disease Day, a postage stamp dedicated to the rare disease epidermolysis bullosa was promoted, as a sign of support for the community of people living with rare diseases and their families.