Russian Cystic Fibrosis Association set up
Its formation was announced at a press conference devoted to the Fifth European Day of Cystic Fibrosis at the Russian Academy of Medical Sciences, as reported by Prof Nikolai Kapranov, from the Russian and Moscow Cystic Fibrosis Centres. He said there had been a number of attempts by parents to persuade doctors to become involved with the NGO “Help for Cystic Fibrosis Sufferers” but without success. So the idea came up of setting up an association of doctors, following international experience by approaching Russian regional centres of treatment for cystic fibrosis. Fifty organisations responded – enough to set up the association, which will guide care of sufferers throughout Russia, and decide on their treatment, including in sanatoria, and rehabilitation. A journal will be issued. Prof. Kapranov said he hoped that the parents’ and doctors’ cystic fibrosis associations would work together. Where this had occurred, outcomes had been positive as far as supply of medicines were concerned. Health Ministry statistics show that in Russia about 2,186 people suffer from cystic fibrosis.