how Ukraine is moving towards European life-saving practices
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What will this change for patients?
“In relatively safe regions, we must do everything necessary to ensure that citizens stay and work in Ukraine, as well as receive proper diagnosis, medical care and therapy.
The structure of health care is changing and family doctors are the first and leading link, the first contact of the patient is with the family doctor, so it is extremely important to raise their awareness so that they can refer patients to screening for orphan diseases in a timely manner. Because nowadays the detection of such diseases actually does not meet the generally accepted expectations,” said Olena Bushmina, head of specialized care at Sanofi.
Olena Bushmina, head of specialized assistance of “Sanofi” in Ukraine
For example, 28 patients with Fabry disease have been diagnosed in Ukraine. But according to WHO estimates, 5% of the population has orphan diseases, so there should be 20 times more such patients.
Most patients do not even know about their diagnosis – they turn to family doctors with simple complaints, such as pain in the heart, numbness of the limbs, poor tolerance to heat, etc.
“Previously, only a geneticist doctor had to refer for testing of genetic diseases, when many symptoms were already manifested. In addition, genetic diagnosis was carried out only in Kyiv, which significantly limited access for many potential patients.
Not many laboratories perform genetic testing in Ukraine, so Sanofi provides access to screening and further detailed genetic analysis based on a laboratory in Vienna, and assumes all logistical costs. In Ukraine, a number of medical centers will perform sampling using the dry spot method (DBS screening),” she explains.
Laboratory and genetic examination will take place in the Austrian laboratory, and confirmation or refutation of the diagnosis – on the basis of the National Children’s Specialized Hospital “Okhmatdit” and at the St. Panteleimon Hospital in Lviv.
A number of specialized centers have free access to screening:
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at the Institute of Cardiology named after Academician M. D. Strazhesk of the National Academy of Sciences of Ukraine;
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at the National Institute of Cardiovascular Surgery named after Amosov;
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at the Institute of Hereditary Pathology in Lviv.
The Sanofi company also plans to involve a diagnostic center in Vinnytsia on the basis of Vinnytsia Medical University and a cardiology dispensary in the project, and then in Odesa, Poltava, Dnipro, Kharkiv and Zakarpattia.
“In the face of a full-scale invasion, patients with rare diseases actually have a double war. First of all, they continue to fight against their illness. Some of them even stood up for the defense of the state despite their disabilities. They are in the trenches and with weapons defending our freedom and right to live in a better country, in particular and in the medical field,” Nataliya Baranovska adds.
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