29 FEBRUARY RARE DISEASES DAY

Today is World Rare Disease Day. By general definition, diseases that occur in 1 in 2000 or less are considered rare diseases. Although these diseases are seen in a very small number of patients when looked at individually, they affect 350 million people all over the world. In our country, this number reaches 5 million.

SMA disease, which approximately 3000 patients struggle with in Turkey, is also included in this group. In order to raise awareness about rare diseases, most of which have progressive and severe symptoms, EURORDIS organized the disease on the last day of February. World Rare Disease Day It was declared as.

In all rare diseases, it is a difficult process for both the patient and their relatives from the moment of diagnosis. They are waiting and they need to be supported in economic and social areas as well as treatment.

A society that is aware of rare diseases, some of which are preventable, just like SMA, not only on February 29 but every day, is also the hope of a healthier future.