|Cystic fibrosis (CF) is the most widespread genetic disorder. Around 15,000 Russians are diagnosed with this condition. Patients with CF may have long and fulfilling lives as long as they receive their medications. We ask you to support this project and facilitate the purchase of life-saving drugs for children with CF.|
CF is the most widespread condition among the well-known genetic disorders. One in twenty people is a carrier of the CF gene. This disease affects all internal organs which produce mucus, primarily the respiratory system and gastrointestinal tract. In the past years, several methods of treatment for CF have been elaborated. Now, similarly to patients with diabetes, people with CF can expect to live longer and with a better quality of life if they receive proper supportive treatment.
Unfortunately, in Russia the extent of state-subsidized help for approximately 15,000 patients with CF is extremely limited. The methods of treatment are the same as in the developed countries; however, there is a common lack of both medications and equipment. Many life-saving drugs are not provided free of charge and the family has to pay for them out of pocket. However, many families simply do not have the means for this. The need for daily care of the sick child deprives at least one of the parents of the ability to earn — and often CF strikes a family with a single parent. Due to the lack of necessary treatment the average duration of life in Russian children with CF is at least twice shorter when compared with their Western counterparts.
We lose them every day. They die quietly, their pupils dilated with horror.
We can save many of them.
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