Regional Public Organization of the Moscow region «Help cystic fibrosis patients» — is a non-profit organization founded in 2009 by parents of children with cystic fibrosis . We very much look forward to supporting benefactors, as both individuals and organizations. Charitable donations earmarked spent on charitable projects organization : providing treatment of cystic fibrosis patients, enteral nutrition, providing technical means of inhalation, providing individual support.
Organization will be grateful for charitable assistance in the following:
• Designing and printing services ( publication of information materials );
• the preparation and shooting video social ;
• in cooperation with the media ;
• help of volunteers.
Cystic fibrosis is a hereditary disease caused by a defective gene CF disease manifests problems broncho -pulmonary system and often pancreatic insufficiency . CF patients do not differ from healthy people.
But there is one fact that makes their lives dependent on certain conditions. CF patients should receive continuous lifelong drug therapy, through which compensated disease, and people can lead an active full life . Without adequate treatment, a person is doomed .
Treatment should be started immediately after the diagnosis, ideally — immediately after birth. Medications for the treatment of CF expensive, the average monthly rate of treatment is based on the state of health from 100 to 200 thousand rubles.
Patients should be provided by the State Drug Administration . But, unfortunately, in the Moscow region and other regions of Russia seriously violated drug coverage, many essential drugs at all today is not available in Russia . All this leads to tragedy, deteriorating health, CF patients in Russia away from the life of the young.
Our organization is making efforts to change the situation with the treatment. Work with government agencies, achieve targeted funding to purchase medicines .
All issues are extremely difficult, protracted decision-making time . Patients impossible to wait months for vital drugs needed today and now. Often it comes to saving lives. It should be noted that in any country, even the most prosperous, the problem does not help CF patients solved only with the help of the state.
In European countries, USA, Canada, Israel created and successfully implemented program of state guarantees of medical and pharmaceutical care of this category of citizens. In this society also does not remain on the sidelines.
Local organizations, philanthropists, media, various firms and corporations hold charity events to support CF patients, charitable donations are going to help .
You can learn about the activities of our organization, to get acquainted with the history of our children and adults on the official website www.cfmo.ru. Support the lives of people with cystic fibrosis, their good deeds !
ул. 9-ой Гвардейской дивизии