Minister of Health Dr. Fahrettin Koca attended the symposium, which was organized with the cooperation of Directorate General for Health Services and Ankara City Hospital, online on Rare Diseases day, and delivered the opening speech.
Delivering a speech, Minister Koca stated that the diseases observed less frequently and fewer than 1 in 2000 people in society are named as “Rare Diseases” and also “the diseases affected the vast majority of the society have been attached great importance in Türkiye as well as in all developed countries, especially in recent years.”
Touching on the studies in the field of rare diseases as the Ministry, Koca also noted:
“February 28th is accepted The Rare Disease Day. Today, we planned an event with a wide perspective, with the contributions of our units, domestic and foreign stakeholders.
As a symbol of our cherishment into this field, we established The Department for Autism, Mental Special Needs and Rare Diseases 2 years ago. We have initiated a lot of studies in order to solve the short-term problems and to develop our infrastructure in the long term. The consultations with the scientific boards, which include the experts specialized in different fields, were organized. We are planning to publish our strategy document officially in the first half of the year.
Minister Koca pointed out that the most important issues in the field of rare diseases are to take joint action with international institutions and organizations, and to be able to deal with the current affairs all together. Therefore, Koca indicated to subscribe to Orphanet, which is the most important international cooperation network for the assistance to the patients, physicians and researchers.
Stating that an important part of Rare Diseases is the Neuromuscular diseases group, which includes diseases such as SMA, DMD, ALS and Cerebral Palsy, Minister Koca continued as follows:
“Recently, we have conducted lots of studies specific to such diseases in the Ministry. Primarily, Neuromuscular Diseases Service Units have established where the individuals suffering from these diseases have multidisciplinary, follow-up and treatment. The infrastructure studies of 21 centres were completed around the country. A separate database system was planned to keep medical and scientific records safely.
In terms of ‘Specialized Service Units’, our neuromuscular diseases units serve as a model. Thus, the institutional experience has a value in improving the quality of service.”
Minister Fahrettin Koca emphasized the prevention of rare diseases in the field of treatment of them, but if they cannot be prevented, they are detected early and treated as quickly as possible.
“The new genetic screening has been added to pre-marriage screening program conducted by our Ministry” said Koca and pointed out “this service started with SMA screening is free of charge in family health centres. Moreover, preimplantation genetic diagnosis method which enables the possibility of selective pregnancy to married couples with the possibility of children with genetic diseases, has also started to be applied in Türkiye. SMA screenings for new-borns will be launched soon.”
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