The project was launched with the support of the chairman of the Kharkiv Regional Council Artur Tovmasian to provide a unified consolidated system of assistance to families with socially significant rare diseases. In particular, the social platform was formed in order to implement the "Family Health" program in the region, which was adopted by the Regional Council in 2020. The program is designed for seven years.

Today, Artur Tovmasian talked with the initiators of the project and discussed the further work of the cluster.

"I support the idea of creating the "Cluster of caring people". This leading initiative of colleagues-deputies is aimed at large-scale work, the key area of which is consultations of leading specialists directly in the territorial communities of the Kharkiv region, as well as training of primary care doctors, organizing and conducting professional exercises for them. We can't leave parents of children with rare illnesses alone with their problems. We need to create an environment where they feel supported. "Cluster of those who are not indifferent" should become just such a platform so that those in need can get the necessary consultations and treatment," Artur Tovmasian, Chairman of the Kharkiv Regional Council said.

According to Olena Hrechanina, Regional deputy, corresponding member of the National Academy of Medical Sciences of Ukraine, doctor of medical sciences, professor, General director of the Municipal enterprise of the Kharkiv Regional Council "Kharkiv inter-regional specialized medical and genetic Center-Center for rare (orphan) diseases", the idea of creating a cluster belongs to the Head of the Department of medical genetics of the Medical University, Professor Yulia Grechanina. Representatives of the Deputy Corps, the National Health Service of Ukraine, and socially active businesses have already joined its implementation.

"In our society, we have increasing number of  children with the so-called autism spectrum and attention deficit disorder, as well as many children with neuro-degenerative diseases. In society, long before COVID, the so-called "silent pandemic" began due to delayed mental development of newborns, because, for example, according to statistics, 42% of children under 3 years of age do not speak, and a large number of various chronic viral infections are detected among autistic people. The center has a huge professional and diagnostic potential in its arsenal, and we can help many people," Olena Hrechanina said.

At the initiative of the chairman of the Standing Committee of the Kharkiv Regional Council on budget issues Liudmila Nemykina, leading geneticists from the Ukrainian Institute of mitochondrial and Epigenomic Medicine of KhNMU and the Department of medical genetics of KhNMU held field consultations in the Balakleya community on the basis of KNP "Balakleya primary health care center".

"Thanks to the creation of the "Cluster of caring people", parents of the Balakleya community who are raising children with special needs have an opportunity to get professional advice. During two days of work in the Balakleya community, Kharkiv geneticists provided advice to 30 residents on rare diseases and chronic viral diseases, including those with postcovid syndrome," Liudmila Nemykina, Chairman of the Standing Committee on budget issues said.

The Chairman of the Kharkiv Regional Council Artur Tovmasian noted that in the near future a meeting will be convened with all those who have already expressed a desire to join the cluster. Plans, forms of work and opportunities to attract additional investment for the implementation of this particularly important project will be discussed in detail.

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