In her capacity as an honorary patron, Maja Ivanova, the wife of Macedonian President Gjorge Ivanov, attended Tuesday evening in Brussels a gala dinner organized by the European Organization for Rare Diseases (EURORDIS). The event aimed at raising public awareness and diverting the attention of the European public towards rare diseases, diagnostics, especially early diagnostics and its importance, treatment and rehabilitation of patients suffering from rare diseases.
“On the eve of the World Rare Disease Day (Feb. 28), a strong support and message is being sent for research, treatments, early detection, early prevention, rehabilitation of patients with rare diseases, positioning of rare diseases in public healthcare not only in EU member states, but also in the countries where we come from i.e. at a national level. We also took the opportunity to spread the voice of the associations working in this sphere from the countries we come from and the voice of patients,” stated Ivanova.
I have had the chance, she added, to emphasize that the Republic of Macedonia is committed to the field of rare diseases through its relevant institutions and ministries.
“According to data, approximately 60 patients with rare diseases are registered in Macedonia. Some of them receive state funds for full treatment. I have had the opportunity to inform them that under a decision of the government of Macedonia, a solution has been passed to increase the financing for treatment of persons with rare diseases, following the example of many European countries. By singling one denar from every pack of cigarettes that is sold, it will significantly boost the budget, i.e. fund for the treatment of persons with rare diseases,” the first lady of the Republic of Macedonia said.
Many individuals and organizations, she added, are supporting the National Alliance for Rare Diseases in Macedonia. It is an organization that I support unconditionally and take part in its conferences.
“From there, we send a strong message to the Macedonian public to raise social awareness about the existence of rare diseases… The patients and their families will always have my support, I will always be by their side in the struggle to detect these illnesses early, for treatments and rehabilitation in a bid these people to live a full and quality life,” Ivanova pledged.
Maja Ivanova for two years in a row is a European honorary patron of the European Organization for Rare Diseases, which is a nongovernmental alliance that brings together 600 civil associations working in the field of rare diseases from 60 European countries. It covers almost 4,000 rare diseases.
EURORDIS holds gala dinners and donor events each year to support the organization itself, as well as its network of organizations across Europe. It aims at supporting the main and current stakeholders in this area and encouraging future possible supporters of the fight against rare diseases, supporting researches to find a cure for rare diseases and in particular harmonizing rare disease policies at European level, i.e. strategies and programs at national level.