Macedonia's First Lady Patron of Gala Evening of European Organization for Rare Diseases
The wife of Macedonian President Gjorge Ivanov, Maja Ivanova, attended Tuesday evening in Brussels, at the gala evening hosted by the European Organization for Rare Diseases as an honorable patron, Telegraf.mk reads.
The aim of the evening was to raise the public awareness and to focus the attention of the European public to rare diseases, their diagnostics, especially early diagnostic procedures and its importance, the treatment and the rehabilitation of patients suffering from rare diseases.
"In the eve of the international Rare Diseases Day on February 28, a strong support is being sent and a message about the research, treatments and early detection, early prevention, rehabilitation of the patients suffering from rare diseases, as well as finding the appropriate place in the public health system, and on the EU level and national level. On this occasion, we had the possibility to convey the voice of association that work on the field of rare diseases and the voice of the patients," Ivanova said.
She pointed that she had the opportunity to stress that Macedonia is working with dedication on raising the awareness about rare diseases, through the competent institutions and the ministries.
"The data I dispose of says that there are around 60 people in Macedonia diagnosed with rare diseases. Part of them receive full treatment and medications from the state," the wife of the Macedonian president added.
Many individuals and organizations support the National Rare Diseases Alliance in Macedonia, an organization that unconditionally I support and participate in its conference, Ivanova added.
"Therefore, we want to send a strong message to the Macedonian public on raising the social awareness on the existence of rare diseases to all interested parties that work in this field. Patients and their families will always have my support, and will always be there with them in the battle of early detection, the treatments and the rehabilitation, in order to enable these people a much better and higher quality life," Ivanova stressed.
The president's wife is the patron of honor of the European Organization for Rare Diseases for the second time. This non-governmental body unites over 600 associations of citizens who work in the field of rare diseases, from some 60 countries in Europe, covering almost 4,000 rare illnesses.
The gala evening was attended by other wives of presidents, prime ministers, members of royal families, EU healthcare minister, diplomats, ambassadors, including the Macedonian Ambassador to Brussels, Andrej Lepavcov, representatives of the social and public life, and EU politicians…
Two years in a row, ambassador of the international Rare Disease Day is Sean Hepburn Ferrer, son of late actress Audrey Hepburn.
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