Lifeline of Kindness: in five years, the foundation has saved 30 thousand children

Over the five years of the Circle of Goodness Foundation's work, it has been possible to expand neonatal screening and begin detecting diseases within the first week after the birth of a child. In total, more than 30 thousand children with severe rare diseases received the help of the foundation. Vladimir Putin stated this on February 13 at a meeting with the head of the organization, Archpriest Alexander Tkachenko. Domestic test systems for the detection of rare diseases are now expected to be released. The President stressed that all diseases in children should be identified at a very early age in order to create conditions for timely treatment.

What did the head of the Circle of Goodness give Putin?

Five years ago, the Circle of Goodness foundation was established in Russia to help children with severe rare (orphan) diseases. During this time, thousands of young patients from different regions have received high-quality care, from medical support to the organization of expensive surgery. The goals of the Circle of Goodness are multifaceted: This includes financial support for expensive medical care, assistance in obtaining medicines and medical devices, including those not registered in the Russian Federation, and work with technical rehabilitation equipment.

The very idea of creating the fund belonged to Vladimir Putin, and it was established by presidential decree in January 2021. That is why the issues of the "Circle of Goodness" are regularly on the agenda of the head of state. On February 13, Vladimir Putin personally met with the head of the foundation, Archpriest Alexander Tkachenko, who gave him the icon of the Mother of God "Healer" from Patriarch Kirill, her image is one of the most ancient in the history of the church.

Historically, it was located in the Alekseevsky Convent in Moscow, and since the 17th century it has been revered as miraculous. It depicts the Virgin Mary leaning at the bedside of a sick boy. His Holiness the Patriarch noted that parents, when they learn the child's diagnosis and prognosis, experience the depth of emotions and sufferings that the Mother of God experienced when the birth of her son and his destiny were revealed to her, the archpriest said.

What has the foundation achieved in five years?

Initially, the fund was created as an additional mechanism that will help ensure children's access to the latest treatment methods. According to Alexander Tkachenko's estimates, 133 rare innovative medicines are currently available for 110 orphan diseases. Thanks to the stable work of the foundation, the government, according to him, was able to expand the neonatal screening program, from five to 36 diseases in 2023, and by two more in 2026.

The Russian Federation is also expected to release domestic test systems that can detect rare diseases. They will also diagnose Duchenne myopathy, he noted.

Such innovations make it possible to identify children who need help as early as the first week after birth and begin treatment before symptoms appear. "Early detection, of course, creates conditions for timely treatment," Vladimir Putin stressed.

According to Alexander Tkachenko, the foundation not only provided Russian children with access to innovative treatment methods, but also gave a chance to those whose illness could limit their opportunity for a full life in adulthood.

— We receive a lot of letters of gratitude, and I would like to read one of them to you. Vika writes from Lugansk. She lost both her parents, then she was diagnosed with spinal muscular atrophy. Thanks to the foundation, she received medical treatment and was able to finish school in Moscow, found a new family, entered Plekhanov University at the Faculty of Journalism, and is now learning to drive a car. She writes thanking us for our attention to children with serious illnesses, for a decision that gives us a chance not just to survive, but to live a full life," said the archpriest.

During this time, the lives of tens of thousands of children have been saved, the priest said. According to him, these are all children with orphan diseases, for the treatment of which there is therapy with proven effectiveness. For example, some receive therapy regularly, and for some orphan diseases, one injection can completely cure a child. According to Vladimir Putin, 30,000 children have already received assistance.

The State Duma believes that such a structure works flawlessly and makes an immeasurable contribution to supporting the life and health of children. And its financing is especially fair at the expense of the citizens themselves. Recall that the budget of the Circle of Good fund is formed at the expense of 2% of the increased personal income tax rate, which is set for Russian citizens whose incomes exceed 5 million rubles per year.

— A very successful form of work was chosen for the foundation, because it did not cause any complaints from citizens who collect money there in the form of increased income tax. Well, this allowed us to solve a number of problems related, for example, to the purchase of unregistered medicines," Alexey Kurinny, Deputy chairman of the State Duma Committee on Health Protection, told Izvestia.

At the same time, in his opinion, it is worth expanding support to Russians of all ages. Now the Circle of Kindness helps children under the age of 18, but it can also provide support to patients after they reach adulthood — until they turn 19, if they received such assistance before reaching the specified age.