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The Center for Genetic Dermatoses to help children and adults with chronic skin diseases opened at the Penza Regional Clinical Center for Specialized Types of Medical Care on Tuesday, September 12.
The center started working thanks to the Ministry of Health of the Penza Oblast with the support of the infrastructure fund "Butterfly Children". The center will treat children and adults with epidermolysis bullosa and ichthyosis. Also, patients with chronic skin diseases – atopic dermatitis, psoriasis and other serious diseases will be able to receive help.
"The Center of Genetic Dermatoses, which opened in Penza, became the first in the Volga Federal District and the country as a whole, where children and adults with epidermolysis bullosa will be treated. The Center employs a multidisciplinary team of doctors who have received appropriate training from leading experts on genetic dermatoses. We work in close cooperation with experts of the Butterfly Children Foundation and specialists of federal centers. Each of our patients receives maximum help and support," commented Vyacheslav Kosmachyov, Deputy Prime Minister and Minister of Health of the Penza Oblast.
The expert laboratory base, high-tech equipment, the possibility of taking into account the medical and social parameters of the "Register of Genetic and Other Rare Diseases" will allow digitizing patient data on more than 1,700 parameters, which plays a key role in building an effective routing model and monitoring the health of patients.
"Regional centers of genetic dermatoses are another important step towards creating a system of support for patients with hereditary skin diseases at the state level. Now there is an opportunity to receive qualified medical care in a "single window" mode, without leaving your region of residence. The experts of the center were trained in the management of patients with genetic dermatoses, the equipment also meets modern requirements. We are grateful to the government of the Penza Oblast for their joint work and willingness to cooperate for the benefit of patients," commented the founder and head of the charity foundation "Butterfly Children" Alyona Kuratova.
Specialized competence centers in the regions make it possible to effectively develop cooperation between the state and NGOs in organizing effective medical and social support for patients. The opening of Genetic Dermatosis Centers is planned in Moscow, St. Petersburg, the Republic of Chechnya, and the Republic of Dagestan. In 2023, it is planned to sign agreements with the Republic of Bashkortostan, the Republic of Tatarstan, the Khabarovsk Territory, the Tomsk Oblast, the Kaliningrad Oblast, and with other regions.
"Today, patients with genetic dermatoses have access to modern and technological diagnostic methods. Modern devices allow timely detection of skin neoplasms with a high risk of developing cancer, reliably assess the effectiveness of targeted therapy, and engage in high-level scientific research. All this significantly improves both the quality and life expectancy of patients, allows avoiding or significantly delaying the onset of complications of diseases," commented Nikolai Potekayev, Chief freelance specialist in Dermatovenerology and Cosmetology of the Ministry of Health of the Russian Federation.
Thanks to a multidisciplinary team of doctors, it is now possible to receive the same amount of medical services that a patient receives during a two-week hospitalization in the federal center in four hours of a day hospital in the Central Hospital, find out the results of examinations on the same day, promptly discuss them with doctors and develop tactics for further treatment. In such an expert center, it is now possible to implement not only medical programs, but also projects aimed at psychological, social and career guidance support.
"The partnership of authorities and non–profit organizations is one of the most important and relevant practices today. The creation of a genetic dermatosis center in Penza is an example of effective cooperation. It is important to note that not only residents of Penza, but also the entire Volga Federal District will be able to receive qualified medical care here," commented Yuliya Lazutkina, member of the Federation Council Committee on Social Policy, senator from the Penza Oblast in her welcome speech.
Social support and integrative programs are the goal of our current efforts. A multifaceted approach will allow to successfully develop regional programs in the context of fulfilling the goals of national projects and proper patient care.