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A Panel on Approaches to Rare Diseases in Children and New Horizons was held at AYBU

Specialists handled rare diseases seen in almost 5 million people in Turkey  

The fact that scientists are trying to come up with a professional point of view to rare diseases and develop a sustainable health policy has been pointed out.

 

Dean of Ankara Yıldırım Beyazıt University Faculty of Medicine Prof. Dr. Reyhan Ersoy said that there are 5 million patients suffering from rare diseases in Turkey and added that “Rare diseases are not so uncommon in Turkey because in accordance with data of 2018, 20-25% of the marriages are consanguineous marriage in Turkey.”

 

 “A Panel on Approaches to Rare Diseases in Children and New Horizons” was held at AYBU

 

During his opening speech in the Rector of Ankara Yıldırım Beyazıt University Prof. Dr. İbrahim Aydınlı pointed out to the fact that rare diseases is a serious health problem and added that “it is an issue that needs to be handled on time or else may cause legal, health and social problems, which foregrounds the significance of legal regulations.

 

Dear Rector stated that scientist are trying to cope up with the issue with a professional point of view to rare diseases and developing sustainable health policy.

 

Rector Prof. Dr. İbrahim Aydınlı, who stresses on the fact that Turkey has a highly developed health system, stated that there is a social security system that includes everyone else in Turkey which is an unprecedented system in Europe. He added that “This is a legal regulation that shows Turkey’s approach to humanity.”

Prof. Dr. Aydınlı, who referred to the fact that rare diseases can be named in Turkey said that:

“Almost all medical vehicles are exported. We should be able to produce them in Turkey. We have the capacity to prevent misuse and the need to export medicine from USA because medicine education in Turkey has showed its respectability to the world. On the other hand, RE-DE is a problem in Turkey. Universities can contribute to the solution of this problem by developing their own RE-DE.

 

 “There are few countries with strong health social security system”

Rector of University of Health Sciences Prof. Dr. Cevdet Erdöl attracted attention to the need for a strong social security system to prevent diseases.

Erdöl, who pointed out to the significance of provision of health services, said that “there are few countries with both social health and social security systems. Turkey is one of these few countries.” He added that rare diseases are rare not for the patients philosophically but for the others, which causes problem for both the child suffering from it and his/her parents.

 

 “We should rapidly open Research and Perfectibility Centres”

Head Doctor of Ankara City Hospital for Children Prof. Dr. Emrah Şenel said that 70% of rare diseases are named in childhood.

Şenel, who pointed out to the fact that medicine used for the treatment of these diseases are mostly exported, said that:

“In 5 years to come, we will come up with new proposals concerned with gene theraphy for 20 new diseases. A payment that demands millions of dollars will be in question concerned with this. Consanguineous marriages is an important factor of the disease, so people should be informed about it. Prevention of these diseases will be our main mission. Meanwhile, we should rapidly open the planned research and perfectibility centres which will transform us from being a market to a centre. We are paying money for the treatment. Instead of this, we should rapidly bring our human power in molecular biology, genetics or genetic engineering together and turn into a centre. 

 

 “30% of Children Die before the Age of 5”

Dean of Ankara Yıldırım Beyazıt University Faculty of Medicine Prof. Dr. Reyhan Ersoy who moderated the panel after opening speeches said that rare diseases are fatal diseases that are rarely seen in the society.  

Ersoy said that there 8 thousand rare diseases; 80% of them are genetics and 30% of the children suffering from them die before the age of 5.

The panel was broadcasted on Youtube Account of Turkish Republic Ministry of family, labour and social services.

 Other Platforms in which the news is included: 

  1. 1- https://www.aa.com.tr/tr/saglik/uzmanlar-turkiyede-yaklasik-5-milyon-kiside-bulunan-nadir-hastaliklari-masaya-yatirdi/2164808

 

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