President of Russia Vladimir Putin: Good afternoon, how is the work going?
Head of the Circle of Kindness Foundation Archpriest Alexander Tkachenko: Five years ago, on your instruction, a foundation was established to support children with severe rare diseases. Thanks to this decision, Russian doctors have been able to save lives of tens of thousands of children across the country.
Vladimir Putin: Thank God.
Alexander Tkachenko: While carrying out the core mission of providing medicines for children, we also sought to bring the community together around them, engaging patient groups and religious organisations alike, because we understood that parents’ emotional and spiritual suffering is often even greater than physical pain.
His Holiness Patriarch Kirill has always approached the issue of helping children with profound attention, care, and pastoral concern. Last year, he performed a true miracle by presenting an icon to the parents of seriously ill children. This was the icon of the Mother of God, The Healer, historically housed at the Alekseнevsky Convent. Revered as a miracle-working icon since the 17th century, it depicts the Virgin Mary leaning over a sick boy at his bedside.
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His Holiness Patriarch Kirill observed that when parents learn their child’s diagnosis and prognosis, they experience a depth of pain comparable to that endured by the Mother of God when the birth of her Son and His destiny were revealed to her. In response, he ordered the establishment of a special prayer service for children with severe illnesses, as well as for their parents and doctors. Since then, every year on October 1, this special prayer has been – and will continue to be – offered in all churches of the Russian Orthodox Church. Through this decision, His Holiness also expressed support for your executive order establishing the Circle of Kindness foundation and underscored the importance of its work.
Please accept this icon as an expression of gratitude from parents and children for the creation of the fund, and as a blessing for your work.
Vladimir Putin: Thank you very much. Thank you.
Alexander Tkachenko: I would very much like to share the results of the foundation’s five years of work. They are being pondered by doctors and by professionals engaged in supporting children with rare diseases. The results demonstrate that the foundation has not only ensured Russian children’s access to innovative treatment methods, but has also given many children – whose illnesses might otherwise have deprived them of a future – a chance to live a happy, independent adult life.
We receive a great many letters of gratitude, and I would like to read one of them to you. It is from Vika in Lugansk. She lost both her parents, and then she was diagnosed with spinal muscular atrophy. Thanks to the Foundation, she received treatment and was able to complete her schooling in Moscow, found a new family, and enrolled in the journalism faculty at Plekhanov University. She is now learning to drive. She expresses gratitude for the attention given to children with severe illnesses, for the decision that provides them not just with a chance to survive but to live a full life. She writes: “Thanks to the Foundation, I have gained a sense of security; the future no longer seems frightening.”
We receive thousands of letters in which parents express gratitude for the fact that their children can enjoy childhood, study, create, love, and grow up alongside their peers. Allow me to hand you this letter from Vika.
Vladimir Putin: Thank you.
Thirty thousand children have received assistance, correct?
Alexander Tkachenko: These are all children with rare diseases for which there is evidence-based therapy. Some children receive therapy regularly. For certain rare diseases, gene therapy is available, and a single injection can fully cure this severe, rare condition.
I would like to note that the Foundation is five years old. A great deal of work has been done, and we are now assessing the tasks we need to address to ensure that more children receive help.
The Foundation was established as an additional mechanism to ensure that Russian children have access to innovative treatment methods. This objective has been achieved. Currently, 133 rare innovative medicines are available for 110 rare diseases.
Thanks to the Foundation’s stable operation, the Government has been able to expand the neonatal screening programme – from 5 to 36 diseases in 2023, and this year, an additional two diseases have been included. This allows for the identification of affected children within the first week after birth and the initiation of treatment before symptoms appear.
Vladimir Putin: Early detection, of course, creates the conditions for timely treatment.
Alexander Tkachenko: We anticipate the introduction of domestically produced test systems that will enable the detection of other diseases and disease groups, particularly Duchenne muscular dystrophy. As a result, the Russian Federation has taken a leading position in the early detection and treatment of children. These successes of the Circle of Kindness Foundation have been made possible thanks to your personal attention and the Government’s efforts.
I would also like to highlight that many of the medicines supplied by the Foundation – along with the experience of their application – represent unique knowledge that we must analyse and, undoubtedly, channel into the development of import substitution programmes and the domestic pharmaceutical industry. Already, there are several medicines developed by Russian scientists that have proven their efficacy, and the Foundation procures them.
Naturally, the knowledge about the application of these medicines must be directed towards the advancement of domestic healthcare, so that young doctors across our country can identify rare diseases.
Vladimir Putin: You have an entire development plan for your activities, do you not?
Alexander Tkachenko: We need your support.
Vladimir Putin: Very well, we will discuss it shortly.
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