FEBRUARY 29 - INTERNATIONAL RARE DISEASES DAY

The International Day of Patients with Rare Diseases is celebrated on the initiative of the European Organization for the Study of Rare Diseases "EURORDIS". The choice of an unusual date - February 29 - is not accidental, because the day that happens once every 4 years symbolizes the concept of rarity.

Orphan diseases are congenital or acquired diseases that occur extremely rarely - less than one case per 2,000 of the country's population. 80% of these diseases are genetic. They not only have a severe and chronic course, but are also accompanied by a decrease in the quality and shortening of the life expectancy of patients.

Such people usually require expensive, continuous and lifelong treatment. Most orphan diseases are diagnosed at an early age, in 35% of cases they cause the death of babies under one year old, in 10% of children under the age of 5, in 12% - between the ages of 5 and 15.

In 2008, Ukraine became one of the first countries to support this initiative and continues to be an official partner. The purpose of this day is to draw attention to the problems of patients with rare diseases, to raise awareness about them and their impact on people's lives.

The European Committee of Experts on Rare Diseases in the World recognizes and officially approves up to 8,000 nosologies, but only 250 of them have their code in the International Classification of Diseases. 275 nosologies have been officially approved in Ukraine.

The state spends 27% of the funds from the state budget allocated for the purchase of drugs on the purchase of drugs for the treatment of rare diseases. But sometimes even this turns out to be not enough, so charitable organizations come to the rescue, and the Charity Exchange "DobroDiy" is no exception.

As part of the work of our key direction - supporting children with difficult diagnoses, we purchase drugs for children with rare diseases. Treating orphan diseases is difficult. Our task is to do everything possible for early diagnosis, the results of which allow timely treatment.

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