The Ankara University Rare Diseases Application and Research Center (NADİR) organized an event entitled “Discover the Rare with Color” to draw attention to rare genetic diseases and to raise awareness.
The event, held within the scope of “February 28 Rare Diseases Day”, was hosted in the foyer of the Morphology Campus of the School of Medicine, and was attended by Ankara University President Prof. Dr. Necdet Ünüvar, Vice President Prof. Dr. Hasan Serdar Öztürk, Dean of the School of Medicine Prof. Dr. Zehra Aycan and Rare Diseases Application and Research Center Director Assoc. Prof. Dr. Fatma Tuba Eminoğlu, as well as members of the management body, head physicians, academicians and medical students.
During the event, which was held to raise awareness of rare diseases, video messages produced physicians were shown emphasizing the need for the early diagnosis of rare diseases based on a multidisciplinary approach.
In his speech at the event, Ankara University President Necdet Ünüvar stated that the issue of rare diseases had become a hot topic in recent years, especially SMA, but noted that rare diseases are not limited to SMA.
Ünüvar noted that such diseases, while not very common in society, come with a considerable burden when taking into account their medical, social and economic dimensions, and said that they may increase in number in the future, creating a considerable burden for society.
He said that one of the basic functions of a university is to consider every issue that society regards as a problem, and to address these issues from both an academic and social perspective. He said, “Ankara University is host to one of the leading schools of medicine in Türkiye, being home to two important hospitals: İbn-i Sina Hospital and Cebeci Hospital, both of which are leading hospitals with broad competencies in the fields of routine health and rare diseases. “The School of Medicine was founded in 1945 and is celebrating its 77th anniversary. We established the Rare Diseases Application and Research Center around a year ago.”
“We Are Set To Become One of the Best Centers in the World”
Underlining that the studies carried out by the Center into rare diseases are continuing, Ünüvar said, “Our aim is to become the best medical institution in Türkiye in a short time, and one of the best centers in the world, although this may take a little longer. The Ankara University Rare Diseases Application and Research Center will, in time, have something to contribute to every issue related to rare diseases. It will be an authority on this matter. We are that ambitious,” he said.
He said that President Recep Tayyip Erdoğan is maintaining a keen interest in this issue, and that the government takes a very firm position regarding media reports of rare diseases, and making efforts to satisfy the social, medical and economic needs of patients.
Stating that there is a team engaged in intensive studies related to this issue, Ünüvar said:
“There are many families in the community who are really struggling with rare diseases. When a child is diagnosed with a rare disease, there is a group of people who deal with its medical, economic and social aspects. We want to find solutions to their problems. We want to carry out studies into how to reduce the potential burden of rare diseases on our government in the future. I really congratulate our distinguished managers in this regard.”
The Objective is to Raise Social Consciousness and Awareness
Ankara University Rare Diseases Research and Application Center Director Assoc. Prof. Dr. Fatma Tuba Eminoğlu,in turn, said that they had organized the event to raise the social consciousness and awareness.
She went on to say that rare diseases are considered significant health problems not only in Türkiye, but also all over the world. “On the issue of rare diseases, their incidence is perceived as low when each is considered individually, but when the more than 7,000 rare diseases are considered together, they constitute an important group of diseases. We estimate that 350 million people all over the world and 6.5–7 million people in Türkiye are affected by such diseases, some 80 percent of which are genetically inherited, and 70 percent are observed in childhood.”
After the speeches, University President Ünüvar, academicians and students left their handprints on boards in colorful paints, released balloons and posed for a group photograph.
https://www.ankara.edu.tr/nadirden-renginle-nadir-olani-kesfet-etkinligi/