International Rare Disease Day (28/02)

At the initiative of the European organization for the study of rare diseases EURORDIS, the rarest day of the year — February 29 — officially received the status of International Rare Disease Day. In non-leap years, the holiday is celebrated on February 28.

Traditionally held on the last day of February, this Day has become an annual awareness-raising event. Its goal — is to raise public awareness of the problems of people with rare diseases, as well as raise awareness of rare diseases and their impact on people's lives.

Rare or, as they are called, orphan diseases include any disease affecting a small part of the population.

Despite the different symptoms and consequences of rare diseases, the problems of most patients who experience them are similar. These are the inaccessibility of correct diagnosis, delay in making a diagnosis, lack of high-quality information, and often scientific knowledge about the disease, difficult socialization conditions, lack of quality medical care and difficulties in obtaining treatment and care.

There are rare diseases in every field of medicine. Approximately 80% of them are genetic in nature. In total, according to experts, there are about 5–7 thousand life-threatening rare diseases in the world; they affect from 3.5 to 5.9% of the world's population. Among the diseases there are very exotic ailments: kabuki syndrome (about 300 cases have been recorded in Europe), Pallister-Killian syndrome (in Europe — 30 cases), progressive bone heteroplasia, Niemann-Pick disease, Gaucher disease. There are also those that are more common: cystic fibrosis, hemophilia, various forms of cancer, myeloma, Alzheimer's disease, Huntington's disease and others.

In Russia, Rare Diseases Day began to be celebrated in 2008. And on January 1, 2012, the amended Federal Law « On the Fundamentals of Protecting the Health of Citizens of the Russian Federation» came into force, in which an article appeared on rare (orphan) diseases. It contains a detailed list of rare diseases and a register of patients suffering from life-threatening and chronic progressive rare diseases.

One of the largest funds providing support to children with severe life-threatening and chronic diseases, including rare (orphan) diseases, is the «Circle of Good», created by Decree of the President of the Russian Federation on January 5, 2021. And public recognition of services in the field of providing care to people with rare diseases is the «Blue Bird» award, established by the public organization «Union of Patients and Patient Organizations for Rare Diseases» in 2010. The award is presented annually to famous politicians, health officials, and medical experts in the field of rare diseases.

Today, traditionally, various charitable and educational events are timed to coincide with this Day by public and charitable organizations and foundations, including one of the main — All-Russian charitable events in support of patients. The funds collected during the campaign are used to treat children and adults suffering from rare diseases.

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