The Ministry of Health Turkey has started work to establish a special department in hospitals, to eliminate problems of patients with rare diseases like ALS, SMA, DMD, MS. It is planned to open 14 fully equipped centers in 12 provinces.

The Ministry of Health plans to open 14 fully equipped in 12 provinces for patients with rare diseases like ALS, SMA, DMD, MS  in order to receive services from specialized units.

Regarding the new of Önder Yılmaz from Milliyet newspaper, Deputy General Director  for Health Services, Assoc. Dr. Mehmet Gündüz stated, "There are more than 6 thousand rare diseases defined today, 5 to 6 million people suffer from rare diseases in our country. The reason of rare diseases in our country is relatives are marriages which is around 20% to 25%. 80% of rare diseases are genetic. 35 percent of genetic deaths are caused by these rare diseases, 30 percent of children die from those diseases before the age of 5 " in his speech at the Parliament during spoke at the Commission on Rare Diseases Research, such as ALS, SMA, DMD and MS.

Gündüz mentioned that, "The main problem is the difficulty of the diagnosis. Early diagnosis is very important. There are specific nutritional treatments, dietary treatments, organ transplantation in some, replacement of the missing enzyme or gene therapy ... For example, in the next one or two years at SMA,  perhaps gene therapy will come next year and we will be freed from drug treatments and replace the enzyme.

14 CENTRALS WILL BE OPENED IN 12 CITIES

Health Services Assistant General Manager Assoc. Dr. Mehmet Gündüz said, '14 centers are planned to be opened in 12 provinces to provide services from specialized units, and proccesses on this are going on.The advanced technological devices and neurology, genetics, metabolism and a few other branches will be combined and it will get easier the access of patient to diagnosis and all other needs. Experimental studies and stem cell studies are also carried out in our country like blood, organ, tissue transplantation.

"Medicines are very expensive, for example, sometimes patients are taking 100 thousand dollars of medicine in the emergency department.  If treatment centers comes up, there will be a treatment room, it is very important that they receive their treatment in a separate department. The preparation of the drug, the duration of infusion, the complications during the infusion the process of all of them is very important, "he said.

https://www.ntv.com.tr/saglik/nadir-hastaliklara-14-ozel-merkez,GbEqQCb0a0Oao_VF5GPeyw