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Special care for butterfly children in Moskow's new EB clinic

One of the leading Russian pediatric institutions, the Moscow-based Scientific Center of Children's Health, has recently opened a special clinical department for children with EB.

This is the first and the only clinical centre in Russia, where the often-called 'butterfly children' may have a complete health examination by experts with various medical profiles. They also receive the appropriate treatments, for their particular symptoms.

The centre was opened upon the initiative of 'BELA. Butterfly-kids' charity foundation, a member of DEBRA International. "The key purpose is the provision of correct medical treatment to patients with EB. Not every medical institution can afford to have the medical personnel, equipment and the multidisciplinary approach to care that is required for treatment of the butterfly children. We aim to provide our patients and their families in Russia with an opportunity to have a thorough examination, get advice from any relevant specialist and finally obtain the necessary treatment" says Julia Kotalevskaya, PhD, physician-geneticist and medical director of the Bela foundation.

A schedule of hospital visits for all people under the care of Bela, from all regions of Russia is planned, based on disease severity of every case and the workload of the centre. The foundation sponsors all the travel expenses of the patient and their accompanying persons (to Moscow and back), medicines and dressings (determined by the consulting physician) as well as a number of research and clinical procedures, not covered by the compulsory health insurance.

Lina Chiriaeva, DEBRA Russia – Fund Bela

Front view of the building

Mother with child with EB in a patient's room

Consultation of a lady with two doctors

View through a door into a lab