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 the date - February 29 - is not accidental, because the day, which occurs once every 4 years, symbolizes the concept of rarity, UNN writes.
Orphan diseases are congenital or acquired diseases that are extremely rare - less than one case per 2000 people in the country. 80% of these diseases are genetically determined. They not only have a severe and chronic course, but are also accompanied by a decrease in the quality of life and a reduction in the life expectancy of patients.
These people usually need 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 5 years old, and in 12% of children aged 5 to 15 years old.
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 of them and their impact on people's lives.
The European Committee for Rare Diseases recognizes up to 8000 nosologies worldwide, but only 250 of them have their own code in the International Classification of Diseases. In Ukraine, 275 nosologies are officially approved.
The government spends 27% of the state budget allocated for the procurement of drugs for rare diseases. But sometimes even this is not enough, so charitable organizations such as the DobroDiy Charity Exchange, founded by Elena and Yulia Sosedka, come to the rescue.
"As part of our key area of work - supporting children with serious diagnoses - we procure medicines for children with rare diseases. It is difficult to treat orphan diseases. Our task is to do everything possible for early diagnosis, the results of which allow us to start treatment in a timely manner," said the DobroDiy Charity Marketplace.