Rare Disease Research is Now Conducted at One Location: Center for Research on Rare Diseases at Ankara University

The Rare Disease Application and Research Center aims to improve multidisciplinary diagnosis and treatment opportunities in the field of rare diseases with a single roof model, to improve the quality of life of patients; to increase clinical research, to create the right supply and demand with the information obtained; to make R&D (Phase I, II, III) and production plans for orphan drugs and advanced medical treatments used in treatment; to train scientists specialised in their field. In addition to the production of scientific data, our goals are to contribute to the development of rare disease policies by raising awareness about the diagnosis and treatment of rare diseases at the community level and to contribute to the development of rare disease policies through pharmacoeconomics studies.

Today, there are 600 national registry and monitoring centers for rare diseases in Europe, encouraging the establishment of new national centers with better scientific standards and systematic approaches. However, there are very few specialized research and application centers in this field in our country. In addition, R&D investments for rare diseases are very low in our country. For this reason, there has arisen a need for a scientific structure in which well-trained scientists in the field of rare diseases can work in coordination within Ankara University. Ankara University Rare Diseases Application and Research Center aims to conduct research in the field of rare diseases with modern diagnosis and treatment methods and continues its studies to increase the effectiveness of the multidisciplinary approach. With the work of more than one discipline under one roof, improvements in the follow-up and treatment of our patients will be achieved, as well as an increase in the number and quality of scientific studies at our university. It is aimed to quickly reach the path taken in developed countries with the drug researches and clinical studies to be carried out in our center.

With the notion of preventive medicine, our center will carry out studies in the field of developing community screening for rare diseases, taking measures to reduce the incidence of rare diseases in our country, developing orphan drugs and gene therapies. Awareness studies will be planned in terms of rare diseases by creating social education and cooperation.

Establishment Process of Our Center

Today, the use of advanced genetic and metabolic screening methods in the field of medicine, the increase in population, the development of health care services and the increase in life expectancy have led to an increase in the number of individuals with rare diseases and the number of rare diseases. This situation will be given to health authorities with both clinical and economic analysis studies to determine the national rare disease prevalence, map, disease burden, cost, orphan drug need and potential, to establish national orphan drug policies, early diagnosis, to evaluate the response to treatment and to develop new drugs. raised the need to contribute. All these reasons are multidisciplinary, necessary clinical, This necessitates the establishment of competent and effective rare diseases centers with laboratory and technical infrastructure. At Ankara University, the first university in the history of the Republic of Turkey, our main goals are to lead the screening of rare diseases in the community, to develop preventive health care policies, to develop new drugs and to advance in the field of gene therapies with our physical infrastructure and experienced staff. For these purposes, it was decided to establish Ankara University Rare Diseases Application and Research Center (NADIR). The center was approved by YÖK on 16 June 2021, and then the center manager, assistant managers, Members of the board of directors were appointed by the rectorate. In the next six months; The physical space infrastructure was created, the web page was established, the academic and technical personnel were assigned, and the budget and equipment needs were determined in line with the plans, and funding and scholarship applications were created for the budget resources. NADIR’s plans in the process are; Initiating research with the funds received, preparing application files for master’s and doctoral programs, creating working environments for student theses, taking part in joint projects with domestic and foreign stakeholders. Academic and technical personnel have been assigned, and budget and equipment needs have been determined in line with the plans, and funding and scholarship applications have been created for budget resources. NADIR’s plans in the process are; Initiating research with the funds received, preparing application files for master’s and doctoral programs, creating working environments for student theses, taking part in joint projects with domestic and foreign stakeholders. Academic and technical personnel have been assigned, and budget and equipment needs have been determined in line with the plans, and funding and scholarship applications have been created for budget resources. NADIR’s plans in the process are; Initiating research with the funds received, preparing application files for master’s and doctoral programs, creating working environments for student theses, taking part in joint projects with domestic and foreign stakeholders

Discover more about Ankara University

Ankara University is a public university located in the capital city of Turkey, Ankara. It was founded in 1946 as Turkey’s first university and has since grown into one of the most prestigious educational institutions in the country. The university is divided into 17 faculties, 47 institutes, 11 vocational schools, and several research centers. The faculties cover a wide range of disciplines including science, social sciences, law, medicine, engineering, agriculture, and veterinary medicine.