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On March 24, the first school for parents of children with cystic fibrosis, “Therapeutic methods for cystic fibrosis patients”, was held in Krasnoyarsk at the State Universal Scientific Library for Krasnoyarsk Territory. This event was organized by “Krylya” (“Wings”): a Krasnoyarsk regional non-governmental organization providing assistance to cystic fibrosis patients.
“This is an extremely important event for us: all of our families require support to a greater or lesser extent. Some families need psychological help. Some require the advice of specialized doctors. We are grateful to all of the speakers for the opportunity to engage in open and direct communication with the parent community, which is unfortunately lacking in interaction with our Ministry of Health”, says Tatyana Chernykh, chair of the Krasnoyarsk regional non-governmental organization providing assistance to cystic fibrosis patients.
Doctors from Saint Petersburg, Moscow, and Samara shared their latest advances in the diagnosis and treatment of cystic fibrosis, one of the rare diseases included in the group of 7 ICDs and requiring expensive treatment. The professionals’ visit was made possible thanks to close cooperation with the Ostrova Charitable Foundation.