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The Circle of Kindness Foundation for supporting children with serious life-threating and chronic illnesses, including rare (orphan) diseases, was established by Presidential Executive Order No.16.

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President of Russia Vladimir Putin: Father Alexander, the Circle of Kindness Foundation has been working since 2021. It has done a great deal to help children and families on the whole. You do a lot, as well as everyone working with you. The St Petersburg Children’s Hospice has been functioning for a long time, even longer than the Foundation.

Archpriest Alexander Tkachenko: Today the hospice is marking its 20^th anniversary. You visited it on Christmas 2019, and your visit gave an important boost to develop palliative care as a separate branch of medicine.

Federal legislation was adopted and funding sources identified. Now palliative care is provided to people across the country.

If I may, I have brought postcards from the children at the hospice, who remember your visit and, of course, invite you again.

Vladimir Putin: Thank you very much.

Alexander Tkachenko: It was a very touching visit. Do you remember Artur, a boy who held out his hand to you and said: “High five”? He is alive, thank God, and goes to school – we have organised teaching for him, – and he sends his regards to you.

Vladimir Putin: My warmest greetings to Artur, and to all your patients, too.

Alexander Tkachenko: Thank you.

If you allow me, I would like to tell you about what the foundation does.

Our foundation has been a miracle for many parents. First, I would like to thank you on behalf of the parents whose children benefited from the foundation. You can see this book in front of you with photos of these children. It demonstrates the feats accomplished by the parents and how they beat the disease.

Vladimir Putin: It is thanks to the parents that it was established. We stepped up our efforts in this regard after one of these families managed to get a letter across to me.

Alexander Tkachenko: The Foundation has done a great deal over the past two and a half years. We have already helped 7,100 children, and are about to buy medicines for 16,000 children suffering from diseases requiring expensive care. On top of that, we procure medical devices, rehabilitation equipment, and pay for innovative surgery.

This effort has helped many children once again enjoy their childhood years. The fact that many of them could start school on September 1 was probably the most touching aspect. This would have been impossible without the medicines the foundation bought for them.

Whenever a new medicine that is proven to offer effective treatment is developed somewhere around the world, Russian children can get it, subject to a resolution by an expert council. We are happy to report to you that Russia is the world’s leading country in terms of the availability of medications against orphan diseases for Russian children. There is no other foundation like this anywhere in the world.

The foundation provides guaranteed support regardless of where people live or their social status. In this sense, it embodies the social justice to which people aspire.

Vladimir Putin: How have you managed to achieve this?

Alexander Tkachenko: Primarily, by holding regular meetings with parents and the patients. This is how we understand what they need. We also bring in the leading experts from the Ministry of Health who help us define the criteria for prescribing treatments, diagnosing diseases and assessing whether they have proven effectiveness. The expert council worked tirelessly to review all orphan diseases with available treatments.

Today, children from across Russia can benefit from these treatments. We already supply these medicines to the territories which have recently returned to the Russian Federation – there are 23 children there.

We devote considerable attention to training the workforce. A special training course for medical doctors was developed. Thanks to these efforts, the disease detection rate has increased and, most importantly, there is motivation to develop other healthcare programmes. In particular, a neonatal screening for 36 diseases, that is currently available everywhere, allows us to detect serious disorders literally within days of a child being born.

The foundation’s goal is to supply medication before severe symptoms develop. We can even supply unique drugs that are custom-made abroad and delivered to the clinic where the child patient is treated, within three weeks of the diagnosis. The drugs from the reserves in the Russian regions can be supplied within three days of starting the treatment. This is our main goal – to ensure that decisions are made fast.

In many cases, the database of all child patients and their personalised history help us to plan properly. Most importantly, the database is integrated into the Gosuslugi government services web portal. Parents can send an application via Gosuslugi and there is no red tape whatsoever. The application process takes only five minutes. Parents’ requests are immediately received by the respective region’s public healthcare authorities and the foundation.

The database notifies the parents of all application stages, from the regional officials’ decision to an expert council’s decision, and the signing of the agreement. During the year, it will also notify the parents of the delivery of the required medication and reserves so that the parents do not have to worry about enough medication in stock.

It is also important to note that one of the important aspects of the foundation’s work is building a transparent operation and social partnership. We meet with parents and patient associations on a regular basis. The foundation receives numerous inquiries, and in the past two years, we have responded to more than 7,000 public requests. We also gave almost a thousand interviews and comments for the media.

As a result, a survey conducted at the end of last year showed that the foundation occupies a leading position in the ranking of people’s trust in public institutions.

Vladimir Putin: They simply see the results.

Alexander Tkachenko: Yes, people see the results of our efforts. And most importantly, we help save lives: without the foundation, many children would not have been able to get help.

We have ambitious plans, the most important of which is to provide children with access to orphan drugs that will appear in the near future. We expect the release of several unique targeted therapy drugs.

Next, we plan to support innovative methods of treatment, in particular, in surgery. Russian doctors and medical research institutes now have several new solutions, and the foundation has already adopted them, in particular, in cardiac surgery.

Vladimir Putin: Are these domestic developments?

Alexander Tkachenko: Yes, they are. Three days ago, a unique operation was performed at the Turner Institute to correct severe congenital scoliosis.

Vladimir Putin: In St Petersburg?

Alexander Tkachenko: Yes, it is in St Petersburg.

We have brilliant professionals who can develop such operations, and the foundation pays for them.

Earlier you instructed the foundation to develop additional types and volumes of rehabilitation. The foundation is already purchasing rehabilitation equipment and will soon consider supporting additional rehabilitation after serious types of surgical treatment. We are working vigorously on a system-wide approach to rehabilitation with the Ministry of Healthcare. The foundation fulfils this task successfully, and most importantly, it saves children’s lives. Many parents are immensely grateful.

Vladimir Putin: You deserve the most sincere words of gratitude and more, you and everyone else engaged in this noble mission, for everything you do for families.

Thank you very much.