Kazakhstan to launch specialized center for rare genetic skin disorders
Children in Kazakhstan living with rare hereditary diseases will soon have access to specialized medical care through a dedicated treatment unit, Qazinform News Agency reports.
The new department will be established at the Kazakh Scientific Center of Dermatology and Infectious Diseases (KRCDIZ), where a specialized unit for the treatment of genodermatoses — inherited disorders affecting the skin, hair, nails, and mucous membranes — is set to open in the near future. The facility will include specially equipped treatment and rehabilitation rooms for children, aimed at improving the quality of care provided to young patients.
One of the conditions treated at the center is epidermolysis bullosa, a rare genetic disease currently registered in 126 patients across Kazakhstan, including 92 children.
Epidermolysis bullosa is a rare genetic condition in which even minor friction, pressure, eating solid food, or sometimes no apparent trigger at all can cause painful blisters to form on the skin and mucous membranes. The skin becomes extremely fragile — often compared to butterfly wings — and even the slightest touch may lead to wounds that heal slowly and can result in infections or serious complications. Because of this extreme skin sensitivity, children living with the condition are often called “butterfly children.”
“Epidermolysis bullosa remains a complex disease, but modern medicine makes it possible to improve patients’ quality of life. Specialized ointments and innovative dressing materials play an important role, as conventional bandages can further damage the skin. Patients are provided with the necessary ointments and modern non-traumatic dressing materials through local government funding,” said Roza Kuanyshbekova, director of the KRCDIZ.
The use of modern care products helps reduce pain, lower the risk of infection, and ease daily skin care.
Specialists at the KRCDIZ regularly consult patients with epidermolysis bullosa, including through telemedicine services for residents of remote regions. This approach allows families to quickly receive recommendations from specialized medical experts. With the opening of the new department, treatment and support for patients with this and other rare diseases are expected to expand further.
Earlier, Qazinform News Agency reported that Kazakhstan is set to build seven new rehabilitation centers for people with disabilities.
