actually we have. uh, for example, there was a situation in one of the regions, when a child was diagnosed at 1 month old, an application for him went to 5 months. and what changed with the imposition of sanctions against russia, there was no russophobia, but there were several companies that refused to supply medicines due to fear of a sanction or direct direct sanctions. but the fund found other ways of supply through parallel imports. uh, although in this case, the children will not suffer. antosha nefyodov four and a half years, and he finally walks. he has

more upper crepe. so he did not know how to take a small step for a person, but a giant one for all mankind 10 years ago. children with such a diagnosis, spinal muscular trophy, were turned to complete paralysis and painful death until adulthood, but now there are three effective cures for darkness. already by that time before the injection. he even ceased to feel the support in his legs, that is, many dispersed. he's totally good at crawling on all fours too stopped. ah, on the pope, it turns out to crawl, yes, and then only the loading doses passed, four at once the first is put immediately the result became noticeable in the child immediately the strength appeared in the legs every thirty-sixth person on earth can be born with such a disease in any family, a healthy carrier of an insidious mutation, like muscovites olga arkhipova and

pavel nefyodov. of course, their older nine-year-old son absolutely did not even suspect this healthy. yes. anton up to a year developed like ordinary children. i was in such a foot. 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 are asked for some tone in the legs. that is, it was normal to assign us a massage. that is. eh, you need to go to a specialist there well. everything, when the one and a half year old son at that time stopped getting on his feet olga and pavel sounded the alarm, then an examination, an analysis by the federal medical and 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 a medical commissions after consultations, the state will allocate money. you will be given drugs. well, literally hmm in about three months you will already have the drug and we are such satisfied and 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. of course, a simple sales manager did not have that kind of money. 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 at the behest of vladimir putin in early 2021. today, virtually all newborns who appear with terminal muscular atrophy and symptomatically actually on these automatically, because we have started pilot projects on neonatal scanning for more than six patients. and if it was symptomatically identified and, accordingly, they have already received, in the near future the head of the seven yasma foundation and the mother of a child with such a diagnosis, olga germanenko, a member of the expert council of the circle of kindness, will receive their medicine. 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 the result of the fund's work is the children of more than 3,600 children. we have already received assistance from the fund, a, and for the purchase of medicines for them, and more than

88 billion rubles have been 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; many distributors experienced difficulties with the supply of drugs; logistics. they had to renegotiate the corridors , and with other cargo transshipment hubs there, there are other transport routes. a, but this only slightly increased the delivery time. basically, we keep within, and in delivery within two months there, and for many drugs it is much less. well, the cost of medicines has not increased, and we have kept the valuable at the level, but

lower, well, or the same as in europe now in the lists of the fund, approved by an expert and according to physical advice, there are 55 diseases, such as only in the world there is some new cure for some complex rare arfan disease. it can also be accessible to the inhabitants of the country. and if the expert makes such a decision, these are centuries. vika appeared in our family 6 years ago. and this is my son vladislav he is 17. at that moment, i was in custody 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 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 steam wand with him. i'm not very good wand for such a patient. she was on sick leave because the child is all. he was in hospitals and institutions. this bad flora also settled at home. we took her out, 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 talking about targeted therapy, then the number of drugs that accept patients. it's just huge. it's elementary when eating un at vicki's.

that's six capsules in one. approximately he takes food intake plus a huge dosage of large amounts of antibiotics, because it is easy for patients to get sick flora and it is very difficult to excrete, the targeted drug is three tablets that are taken on day 2 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 to receive this drug. we contacted the fund good circle. 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. cockerel, she is the same in the exam, but these are stories,

you know that you are lucky. maybe they practiced at home before the exam, drew fairy tales and they were just drawing 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 bring three cards to her dose with a 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 can be treated to invent and test a drug using genetic technologies are complex expensive. 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 not being turned on. she regressed and became very deformed. uh, the spine and spine squeezed the back of the brain, and in i brought her 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 the first symptoms of a genetic disease began to appear in little darina, defects in bone cartilage and connective 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 then she was five was the weight 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 entire e budget planned for health care. yes, for the entire population, the family began to seek protection in all instances, but to no avail in and they decided on medical migration was sold a spacious two-room apartment in rostov in order to buy a tiny studio in new moscow on a mortgage, where darina in a wheelchair cannot even turn around and receive drugs 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, and behind the drug. yes, to save her life. hmm. i think any mother, uh, is

ready to overcome more than 1,000 km and go through more than one difficult path so that the child simply lives since then, as on medicine began spending federal funds through circle one. the region cannot refuse a drug to a sick child, and knowing that bottles of their loans will already drive darina away, she can make plans for the future. i am learning english at school and my appetizer. i have always had a predisposition when ekam, i am a humanist. i'm good at surgery, uh, surgical tolkien, so because i'm good at it, it turns out, i'm so interested, next year, when i go to seventh grade, i 'll study dancing, spanish, as additional coffin at school. i was going to sleep on yuki and psychological. i'm interested in understanding how

society works and how people mate with each other, but like a more stable boot. i wanted the profession of an interpreter for myself, however, as the management of the krug dobryi fund says, another problem has arisen. regions are in no hurry to submit lists of children in need of treatment on time. since drugs are registered, they are purchased by federal state institutions under the forty- fourth federal law. this process can take, well, up to 4 months in order for the patients of the circle of kindness foundation not to experience a shortage of medicines, so that there is no interruption in treatment, the foundation notified the regions of the need to send applications as soon as possible, unfortunately, and not all regions have time to do this, but there are regions that are exemplary. and i'm happy to commend 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 has not formed an application and a mechanism of influence, respectively, there is also no definite one, because what can 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 drugs for children of russian citizens living in the lugansk and donetsk people's republics, all russian citizens, regardless of their place of residence, can receive this the help of russian citizens living in the territory of the end of the luhansk republics, but should have some kind of attachment to the place where this topic will be treated and are very actively and successfully engaged in the powers of the rights of the child under the president of the russian federation alekseevna vova belova here with her we

identified their patients and these patients are citizens of russia, but they also received state drugs, they didn’t take them. well, constantly. mom, i can't go anywhere for a walk. well, i mean, i was always with my mom. and so, well, basically, mom is at home. i can take a walk that her ksyusha is developing in no way other children and mother irina kirdan and the sverdlovsk luhansk people's republic noticed in a year and a half it was 2014 irina tells evil daughter for examination under shelling, but ksyusha could be correctly diagnosed only at 3 years old, when the girl doctor lisa was taken to moscow long before her death. it turned out to be darkness, however, they couldn’t help the baby then, after 5 years, there was a drug and we hope that we can to 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 is simple medicine and it’s simple

or, like drugs, there are interruptions 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 want to save a child, take russian citizenship and act, because you don’t have time. that's how we did we get russian citizenship, found people who agreed to spell us, because registration is also needed and applied. he is cool, good on june 1, on children's day, nine-year-old ksyusha drank syrup with diploma for the first time. and although doctors promise an effect. only after a year of admission. ksyusha has already noticed changes for the better. well, we take it at 12:00, exactly at one, well, always at the same time it is necessary, mm, the hand began to rise, well, in the nearest position. okay, nothing to stir a little more, but since the family lives while 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 sheltered us, helped us bring us here, they say, and then a temporary shelter. we do not live here with them, because we have our own housing. we don't have it physically. we simply cannot afford to buy nothing, and we need to get medicines on a regular basis and mmm. well, we need to be here and now because where we lived and we will not be provided with a family 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. they joined us so that we would not wander around the hostels to the homes of those who shelter us, but would live at home, 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 in the family has changed for the better. antosha will be able to go to kindergarten, and their mother olga is only worried about one circle of goodness, they drew only around children under 18 years old. in russia, children are being treated, but now the problem is precisely with adults and teenagers, and it goes further. yes , after 18 years. they can't get the drug. well , what will happen to our child of 4.5 years? that is, through there is 13.5 years, what will be, in general, we can’t imagine. hmm, by taking care of children, the circle of kindness, as they hope, members of its expert and trustee councils 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. i don't know who my wife is. the army needs someone to protect it. will come for you.

how much longer will we live? i do not care. lord, the family is with us a stronger reason, hold on. dad's heart is coming soon

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