Deti-babochki

The Butterfly Children Charitable Foundation is the only organization in Russia that, since 2011, has been providing systematic assistance to patients with rare (orphan) skin diseases: epidermolysis bullosa (EB) and ichthyosis. These are severe hereditary pathologies resulting from a genetic mutation, due to which the skin is unable to perform its main functions - protective and barrier.

Under the patronage of the foundation there are more than 2,500 patients in the territory of the Russian Federation and the CIS countries. The Foundation accompanies the wards throughout their lives, building a support system around the patient, implementing programs of medical, targeted, legal, psychological and informational assistance.

This approach allows avoiding early disability and death of ""butterflies"" and ""fish"", complications of diseases, promotes the socialization of patients and their families, and reduces the level of social tension.

The Foundation also deals with the problems of refuseniks with orphan gene dermatosis, social projects for parents of special children, conducts educational work in the medical community, organizes additional education for doctors, and carries out clinical and scientific cooperation with leading federal medical centers.