The Circle of Goodness Foundation has helped 30 thousand children in five years of work

In five years, the Circle of Kindness Children's Support Fund has helped 30 thousand children with a dangerous disease at a very young age, who can now live a full life. On January 5, the parents of the kids told about specific cases.

"Rejection, fear, misunderstanding of what to do," Ekaterina Koliberdina, the mother of Vladislav, who was born a month ago, shared, commenting on a rare congenital disease — SMA (spinal muscular atrophy), which can lead to complete muscle atrophy.

Not so long ago, this diagnosis sounded like a verdict. It can now be cured in the early stages.

"The way rare orphan diseases are treated in our country, they are not treated anywhere else. We have a unique opportunity to treat children quickly with the best quality drugs," said Evgenia Uvakina, Head of the Department of Neuropsychiatry and Rehabilitation at the National Research Medical Center for Children's Health.

There is nothing more expensive than genetic drugs. They cost hundreds of millions of rubles. If it were not for the help of the Circle of Goodness Foundation, it would have been impossible to save many children with orphan diseases. They play football, frolic, and prepare to celebrate Christmas with the whole family.

Last year, another boy, Matvey, received a genetic medicine that saved him from spinal muscular atrophy.

"The child grows and develops like a normal, normal, typical child. But doctors, of course, say that if it were not for this drug, there would be a different clinical picture," said Matvey's mother Maria Demchenko.

The head of the foundation, Archpriest Alexander Tkachenko, says that this story began spontaneously. A quarter of a century ago, his parishioners offered the entire church to help seriously and terminally ill children, and soon the first hospice in Russia was established.

"The parishioners of St. Nicholas Cathedral and I began to help children with oncological diseases, mainly those whose treatment was impossible due to the severity of their condition. We raised funds, we delivered groceries ourselves, we invited doctors," Tkachenko says.

Five years ago, after visiting a hospice in St. Petersburg, Russian President Vladimir Putin proposed creating the Circle of Goodness foundation and filling it with a wealth tax to purchase expensive rare drugs. All over the country, children with orphan diseases began to receive help.

"Well, what if we sum up the first results? Here are just two figures: over the years, dozens of new names have been added to the list of rare medicines, and 30 thousand children's lives have been saved," Izvestia correspondent Igor Baldin said.

At the age of nine, Dasha was diagnosed with a rare disease, cystic fibrosis, a life—threatening lesion of the endocrine system and lungs.

"I probably couldn't talk about it with anyone for a year. It was very hard, really, it was just a shock for me, because we don't have such a family history," said Daria's mother Anna Kryshchindiuk.

Now, thanks to the expensive drugs provided by the foundation, she can live a full life.

"I don't feel my illness at all. I live with this fact, that's all. I don't show it in any way. And it doesn't bother me in any way," Dasha said.

She's in college and she's always thinking about which university she should go to. Matvey's parents are also currently choosing a kindergarten for their baby. And Ekaterina and Vladik are returning from Moscow to their native Volgograd to their loved ones.

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On October 13, 2025, Snezhanna Gorchakova, Chairman of MBOO HUNTER SYNDROME, member of the Board of Trustees of the Circle of Goodness Foundation, said that patients with rare diseases unite to defend equal rights to access modern therapies and innovative medicines. According to her, it is important not to divide patients by nosology, but to achieve equal access to the necessary drugs for all those living with rare diseases.

All important news is on the Izvestia channel in the MAX messenger.