Redkie Deti

Maxim has a rare skin disease, due to which his skin is so fragile that it needs constant protection. This spring, Maxim received another difficult diagnosis - renal amyloidosis. It is impossible to cure it, however, thanks to a special medicine, it is possible to maintain normal blood counts.

Obtaining this medicine under compulsory medical insurance is difficult; the child is not always…

The Rare Children Foundation helps families who have children with rare genetic diseases. In addition to targeted assistance, the Foundation helps families overcome all-round difficulties, including psychological ones. How to cope with burnout, inform a rare child about the difficulties of a diagnosis, find words for a sibling, withstand relapses, resist pressure from others, not fall into…