there are already 55 rare diseases on the list of the state fund circle of kindness, which are treated with the most advanced methods. any effective medicine, regardless of its registration in the country, can be purchased for small patients. what has changed in the work of the foundation with the imposition of sanctions and how the circle of kindness helps children with sarfan diseases in donbass what are these doomed children who do not live to be 10? in general, she was so gloomy that she somehow felt a little uneasy. the word disability for me was generally a shock. i couldn't it is to perceive just this word that will be associated with my child 88 billion rubles. for the most expensive medicines in the world, more than 3,600

saved children. only in the first year and a half of its work, just like the state foundation, the circle of kindness has changed assistance to children with rare diseases. the circle of kindness has become, uh, literally a circle of salvation for us. he saves from, uh, the fear of being left without treatment, he inspires confidence, and in the future. what problems in health care have been overcome, and what are yet to come, a we have a problem when the regions delay the filing of applications, in fact we have and for example, there was a situation in one of the regions when an emergency was diagnosed for a child at 1 month old, an application for him went to 5 months. and what has changed with the imposition of sanctions against russia and there was not, but there were several companies that refused to supply medicines for fear of a sanction or direct direct sanctions. but the fund found other ways of supply through

parallel imports, so, so to speak, in this children will not be harmed. antosha nefyodov is four and a half years old, and he finally walks for a person, noginsky for all mankind 10 years ago. children with such a diagnosis, spinal muscular trophy, were drawn to complete paralysis and painful death before adulthood. but now from the darkness, there are as many as three effective medicines. he even ceased to feel the support in his legs, that is, many dispersed.

he is completely good at crawling on all fours, too . ah, on the pope, it turns out to crawl, yes, but then the loading doses just passed, four at once the first one is immediately the result became noticeable in the child immediately the strength in the legs appeared although the pathology is rare with the mother only one out of 10,000 newborns, and a child with such a disease can be born in any family every thirty-sixth person on earth a healthy carrier of an insidious mutation, like muscovites olga arkhipova and pavel nefyodov. of course, they did not even suspect this; their older nine-year-old son is absolutely healthy. yes. anton developed up to a year, as usual children. i was in such a mortar. hmm. i was just analyzing our family, our tree. yes, families back there, grandmothers, great-grandfathers, uncles, aunts, and we didn’t have such cases at all and my husband had the same thing, and i didn’t understand where it came from? how and why the birth at one time

occurred, yes, that is, on its own, nothing at all. and during the course of pregnancy, there are no signs. well, there was no neurologist, did not notice anything. she said that you just have some kind of tone in your legs, that is, it was normally assigned to us massage. that is. eh, you need to go to a specialist there well. everything, when the son, who was one and a half years old at that time, stopped getting on his feet, olga and pavel sounded the alarm, then an examination, an analysis by the federal medical-kinetic center and a frightening diagnosis, the family immediately took under the wing a pound of the family, smai, and a children's hospice house with a lighthouse and encouraged medicines for a rare disease is obliged to provide the regional ministry of health at that time we were told that now, after the medical commission after the consultations, the state will allocate the money will buy the drug for you and well, literally in three months you will already have the drug and we are such happy happy parents that there will be a medicine that the child we did not know how serious this disease is, but then time passed. and

nothing moved. and everyone told us that there was some kind of delay or something else, i began to understand that there would still be no cure. we have already begun to think about the training camp, then there was a loading dose of some injections. yes, it cost 45 million rubles. such money from a simple sales manager, of course, there were no parents. anton went to court and received only a year later. the first life-saving injections from penza is a typical story for most families who have encountered similar diseases. courts, pickets of parents. the deaths of children. this lack of treatment put an end to the circle of good foundation, created by vladimir putin’s decree in early 2021. today, almost all newborns that appear with the final we begin to atrophy and symptomatically , in fact, these automatically, because we started pilot projects for ononatal scanning. already more than six patients. there are

symptomatically been identified and accordingly they are either narrower. or in the near future you will get your own medicine, the head of the sma family fund and the mother of a child with such a diagnosis, olga germanenko, a member of the expert council of the circle of kindness. which also includes the heads of specialized ngos and children's hospitals, the head of the state fund, the priest alexander tkachenko, the creator of the first children's hospice, the most important result of the fund's work is more than 3,000-600 children. children. already received assistance from the fund, a and for the purchase of medicines for them, and more than 88 billion rubles were allocated from the financial source of the state fund. increasing the excess income tax for wealthy citizens from 13% to 15%. this should give at least 60 billion rubles. every year, which is critically important for patients, the timely delivery of genetic products from foreign pharmaceutical companies to russia was almost not affected by the sanctions, but many distributors experienced difficulties with the supply

of drugs and lengthened logistics corridors. them i had to renegotiate contracts, and with other cargo transshipment hubs there, there are other transport routes, but this greatly increased the delivery time. basically, we keep within, and in delivery within two months, and for many drugs it is much less, but the cost of drugs has not increased, and we have kept the valuable at the level, but lower, well, or the same as in europe now in lists of the fund, approved by an expert and according to physical advice , there are fifty-five diseases, as soon as in some new cure for some complex rare arfan disease appears in the world. it can also be accessible to the inhabitants of the country. and if the experts make such a decision, it's centuries.

vika appeared in our family 6 years ago. and this is my son vladislav he is 17. at that moment, i was in charge of one-year-old vika denisova, my first adopted daughter. nika ivleva did not yet know how much the life of her family would change. a child with some kind of disease that will be feasible for me, because if your goal is to help, then you need to take someone who really needs help when you first meet the baby in the hospital. nika says she was horrified and how can a baby cough like an experienced smoker. vika was diagnosed with cystic fibrosis, a severe genetic disease associated with impaired respiratory function, she also came to our house with infected lungs. she had a wand with them. i have a very good wand. for such a patient. she was in hospital because the child is everything. he was in hospitals and

institutions. this bad flora also settled at home. we administered it, and this means for such a patient that he has from 5 to 7 inhalations a day, endless inhalations, rehabilitation and lifelong intake of maintenance drugs, the thymia has almost come to terms with the palliative status of the child, until she found out that a new one was invented in the usa a cure for cystic fibrosis from recaftu, which allows you to almost forget about the disease. if we are not talking about targeted therapy, then the number of drugs accepted by patients. she's just huge , it's elementary when eating karyon. vicki is allowed. that's six capsules in one. approximately he takes food intake plus huge dosages of large amounts of antibiotics, because pathogenic flora settles on the patient's lung. and it is very difficult to excrete, the targeted drug is three tablets that are taken a day, 2 are taken in the morning and one tablet is taken in the evening. the cost of the drug per month is more than one and a half million rubles for

receiving this drug. we turned to the circle of kindness foundation. and now our eldest daughter has been taking this medicine for a month after 3 weeks. after the first reception three cards. vika has gained weight per kilogram and height by 2 cm. she almost does not cough and is looking forward to completely canceling inhalations. energetic vika devotes all the time to preparing for the first grade and drawing. she successfully passed her art school exams. she is the same cockerel in the exam, and this is on tell me how lucky you are. maybe at home we trained before the exam, drew fairy tales and just drew the fairy tale cockerel and then she comes out so happy from the exam, she says, mom can’t imagine it, we had to get through the exam drawing and the cockerel. in family. there are also two adopted daughters. the average veronica was also able to dose three cards for her dose. she will be able to receive it only after a year. it is allowed to be taken only by patients older than 7 years.

there are more than 6,000 rare diseases in the world, but only about 300 are treatable it is difficult and expensive to invent and test a drug using gene technologies. and since patients are potentially few pharmaceutical companies seek to compensate for their costs with prices that are unbearable for more than one family, for example, the annual course of the drug vizyme from flour, polysaccharidosis costs 60 million rubles. and this weekly dropper throughout life is worth missing one irreparable happen. as happened with the gifted klimenko, she has a weakness. uh, muscle weakness caused by the fact that, without treatment, she had regressed and very much deformed. uh, the spine and spine squeezed the back of the brain, and i brought it to moscow. well, twelve-year-old darina is practically paralyzed without the help of her mother yulia, she

cannot even roll over on her side. but she had every chance to get on the feet of the family. in rostov-on-don, when little darina began to develop the first semantic disease, defects in bone cartilage and accusative tissue, then, after a consultation of doctors, the ministry of health of the region purchased the necessary drug for her during 2015 and early 2016 the child received therapy in full. she showed very good results, she was then five, she weighed less, but unfortunately, referring to the high cost. e, the drug and its low efficiency, e, the ministry of health of the rostov region refused, e, refused to purchase therapy for the next year for many regions. it is difficult to find such an amount to provide one child in many regions of our country with 60 million rubles. is the sum of the total e budget planned for health care. yes on the entire population of the family

began to seek protection in all instances, but to no avail. as a result, they decided on women's migration, they sold a spacious two-room apartment in rostov so that i could buy a mortgage for a tiny studio in a new building, where darina in a wheelchair cannot even turn around and receive a drug from the ministry of health of the capital, but on the scales. and yes, among everyday disorder. may my daughter's life lie, and therefore, for the drug. yes, to save her life. well, i think any mother, uh, ready to overcome more than 1,000 km and walk more than one a difficult path for a child to simply live since federal funds began to be spent on the drug through circle of goodness one. a region cannot refuse a drug to a sick child, knowing that vials with physical loans have already been purchased. darina can make plans for the future. he is at school and is my appetizer. i have

always been wrong. i have good crunches. i'm surgical then, so because i'm doing something. i'm so interested here, next year, when i go to seventh grade, i i will study spanish as an additional body at school. i was going to enter yuki and psychology. i'm interested in understanding how it works and how people act with each other, but as a more stable support. so i wanted the profession of an interpreter for myself. however, as the management of the krug dobryi foundation says, another problem has appeared. the regions are in no hurry to submit lists of children who are being treated for treatment on time, since registered drugs are purchased by a federal state institution within forty fourth federal law. this process can take, well, up to 4 months. in order for the patients

of the krug dobryi fund not to experience a shortage of medicines, so that there is no interruption in treatment, the fund notified the regions of the need to send applications as soon as possible, unfortunately, and not all regions have time to do this ah. there are regions that are exemplary. and i'm happy to praise the kostroma region, which has applied for all of its patients, but there are regions that are very bad at applying. and in particular. here. e, republic of dagestan a and for 160 applications sent by parents from more than one did not form an application and a mechanism of influence, respectively, there is also no definite one, because the fund can call the ministry of health and ask to do this. and? well, then the ministry of health decides the regional ministry of health. here, too, in an amicable way. in fact, some kind of instrument of influence is really lacking, another difficult task that the circle of good is currently solving. how to provide. vital medications for children of russian citizens living in luhansk and donetsk

people's republics, all citizens of russia, regardless of their place of residence, can receive this assistance from citizens of russia living in the territory of the end of the lugansk republics, but they must have some kind of attachment to the place where this topic will be treated and are very actively involved in the powers of the rights of the child under the president russian federation sea alekseevna lvova belova, hmm, and together with her we identified these patients and these patients are citizens of russia and also received no medicines. well, constantly. mom, i can't go anywhere for a walk. well, i mean, i was always with my mom. and so i, well, in principle, my mother is at home. i can go out there for a walk, the fact that her ksyusha is developing in no other way. the mother of irina kirdan and the sverdlovsk lugansk people's republic noticed her children at the age of one and a half in 2014. irina tells evil daughter for examination under shelling, but ksyusha was able to make the correct diagnosis only at the age of 3, when the

girl was taken to moscow by a doctor. lisa, shortly before her death, turned out to be sma, but help the baby, then they couldn’t later, a drug appeared there 5 years later. and, but we have hope that we can live, finally this is our lifeline, but given the circumstances that we are in the luhansk republic. for us. it 's simple, as they say sky-high and for its inhabitants. no, it’s not allowed, there are simple medicine and simple medicines and it’s difficult. and this is simply unrealistic. it's just a budget. uh, the republic itself is much smaller. than this drug we were told if you if you want to save a child, you take russian citizenship and act because you don't have time . so we did, we received russian citizenship and found people who agreed to register us. just registration is also needed and applied. on june 1, on children's day, nine-year-old ksyusha drank syrup

carving plan for the first time. and while doctors promise an effect. only after a year of admission. ksyusha has already noticed changes for the better. well, we pick it up at 12:00, exactly one, well, always at the same time, yeah hmm hand began to rise, well, in a supine position. well , why move a little more, but since the family lives, still abroad. they need to travel 1,200 km from home every month to get a new bottle of the drug for a year, the course of which costs 20 million rubles. and the fair help of the doctor sheltered us. liza , they flew in and helped us. we were brought here. as they say, and further temporary shelter. we live here with them, because of our own housing. we don't have it physically. we simply cannot afford to buy anything, and we need medicines for receive on an ongoing basis and mm. well, we need to be here and now, because where we lived and where we were born, they will not provide us, and until

this mechanism reaches us. as they say, we have time to wait. no, the most ideal option would be if, of course, a referendum was held, and us too. or they joined so that we would not wander around the hostels to houses where someone would shelter us, but would live at home and receive medicines. wait at the playground. anton nefyodov differs little from other children. although parents understand that their son is unlikely to ever run a cure for a genetic disease. even if the most expensive is not a magic pill. throughout life, it is necessary to consolidate the effect, at least, with breathing exercises and physiotherapy exercises, but the quality of life of the family has already changed for the better. antosha will be able to go to kindergarten, and mother olga is only worried about one thing. the circle of good, outlined only around children under 18 years old. in russia, children are being treated, but now the problem is that of adults and adolescents, and that is further. yes, after 18 years. they

can't get the drug. well, what will happen to our child 4 1/2 years old? that is, after 13.5 years, what will happen, in general, we can’t imagine. hmm, taking care of the children of the circle of kindness, as they hope, members of its expert and board of trustees will remove most of the financial burden from the regions. it will be easier for them to find funds for adult patients. and in order to give the subjects of the federation time to prepare, the fund will provide its wards up to 19 years of age with more than enough to find funding.

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aiming at the civilian population and social facilities, the nationalists of the kiev regime, this morning fired several dozen shells, in donetsk makeyevka, the militants do not leave attempts to attack zaporizhia. nuclear power plant was shelled again today how is the situation in donbass zaporozhye now