International Day of Rare Diseases

At the initiative of the European organization for the study of rare diseases EURORDIS rarest day of the year — 29 February — officially became the International Day of Rare Diseases (Rare Disease Day). In non-leap years, the festival is celebrated 28 February.

The purpose of the Day — to draw public attention to the problems of people with rare diseases, as well as to raise awareness of rare diseases and their the impact on people's lives. Despite the different symptoms and effects of rare diseases, the problems of the majority of patients in whom they are observed to be similar. This unavailability of proper diagnosis, delay in diagnosis, the lack of quality information, and often scientific knowledge about the disease, severe conditions of socialization, lack of quality health care and the difficulties in getting treatment and care.

Rare diseases are found in every area of ??medicine. About 80 percent of them have a genetic basis. In total, according to expert estimates, there are about 5-7 thousand life-threatening rare diseases. Some of them are very exotic diseases: Kabuki syndrome (in Europe were about 300 cases), Pallister-Killian syndrome (Europe — 30 cases), progressive bone geteroplaziya, Niemann-Pick disease, Gaucher's disease. There are those that occur more frequently, cystic fibrosis, hemophilia, and various forms of cancer, myeloma, Alzheimer's disease, Huntington's disease, and others.

In Russia Day rare diseases began to celebrate in 2008. A January 1 in 2012 came into force the amended Federal Law "On the basis of the health of citizens of the Russian Federation", which published an article devoted to the rare (they are also called orphan) diseases. It contains a detailed list of rare diseases and the register of patients suffering from life-threatening and rare chronic progressive illnesses.

One of the major events dedicated to the Day of rare diseases in Russia is the Russian charity event in support of patients. Collected during the campaign funds are used to treat children and adults suffering from rare diseases.