MINSK, Mar 15 – Sputnik. In Belarus, it’s important to create a genetic center so that patients with rare genetic diseases do not stop looking for treatment due to local doctors’ confusion, Elena Grigoryeva, executive director of the Social Assistance international public association, said during a meeting at the Sputnik Belarus multimedia press center.
Sputnik / Alexander Shurmelev
Patients ask the Ministry of Health to create a public council – what prevents
Grigoryeva, as a participant in the Partnership of Patient Organizations of Belarus, explained that in our country there are diseases that are found in only 3-4 people. Often in ordinary clinics, doctors have very little experience, so patients are redirected many times to different places where they do not find answers until they get tired of this endless walking and go into depression.
“In connection with this situation, we believe that it is important to create a working system for examining and assisting patients with rare genetic diseases. Our proposal is to create a specialized structure, the so-called genetic center, where patients with rare genetic diseases could be consulted from all over the republic and there was a system for specialists to formulate individual examination and treatment plans, "explained Grigorieva.
According to her, when the disease is really rare, there is a lot of uncertainty on the part of the doctors in the field, it is also very difficult to orient the patient himself, “whom to listen to, where to go, what tests and how often to take, and also what kind of medical care for a particular disease it is important to get " In addition, a lot of money is spent on tests that are not needed.
Unfortunately, often such diseases concern children, and here not only the sick but their parents are in complete confusion.
“If the suspicion of the disease is“ primary immunodeficiency ”, we already know our scheme where to go. But other diseases … Yes, probably, the Ministry of Health has some kind of structure, specifics, who takes responsibility and where similar diseases may have something The children are mainly Borovlyany: the center of pediatric oncology, hematology and immunology, "said Iya Dirko, deputy chairman of the RPO PID Save the Immunity.
She added that the center has a good base, diagnostics and examinations. But this is perhaps the only center in Belarus where they can more or less prompt and direct the patient.
The full version of the conversation, see the video from the press center.