The Circle of Kindness Foundation has included cerebrotendinous xanthomatosis (CTX, sterol 27-hydroxylase deficiency) in its list of severe and rare diseases. The members of the expert council have also made the decision to add chenodeoxycholic acid (TN “Lediant”) to the list of drugs, medical devices, and technical rehabilitation equipment that will be purchased by the fund. They are now proposing this decision to the fund’s board of trustees for approval.
Cerebrotendinous xanthomatosis (CTX) is a rare condition that affects the body’s ability to metabolize fats known as cholesterols. Patients with CTX are unable to break down different forms of cholesterol, which build up in certain areas of the body.
The Russian Foundation “Circle of Kindness” is an additional mechanism to help children with serious and rare diseases to existing state programs. The fund was established on January 5, 2021, to accelerate and financially secure the purchase of, first of all, expensive medicines for genetic diseases that have not yet been registered in Russia, as well as the purchase of costly medical devices and payment for new types of operations.
