The new center will help families with rare diseases. The inspiration came from Norway


The project was presented at the center by representatives of AVO and the Norwegian center Frambu. According to AVO president Anna Arellanesov, the aim of the center is to ensure patients have equal access to medicine. According to us, the path to diagnosis itself is often complicated, patients do not know what to do after hearing the diagnosis. It is very difficult to deal with such a situation, said Arellanes.

Patients not only have to find medication and supportive therapy, they also need psychological support and services. Only a doctor knows these diseases and can really help. We see this in everyday practice, Arellanes said.

The first connected with specialists is one of the educational center. The new European reference center operates on the principle of interconnection, specialized in working on countries thanks to its expertise and professional capacities.

The educational center should be fully operational from 2028. In the future, it should be paid for by insurance companies, representatives of the AVO want to discuss this with insurance companies and the Ministry of Health. The first patients with their families tried the stay last year. According to Monika Nmcov, the five-day stay was experienced by children with various diagnoses.

There were lines that connected us all. Fear, uncertainty, exhaustion, helplessness, said Vra Matoukov, who took part in the educational stay with her daughter. In my life we ​​are forever alone. The health system is not comprehensive and it is a long way. But the Bn people cannot understand it. This was the place where we wanted to meet for a long time. We saw that we were there with someone who understood me, she described.

We tried it, one approach works. We are preparing those stays for this year, said the mayor of AVO Ren Bean, adding that the organization will continue to offer a number of stay courses and various services in the coming years.

Around 300 million people worldwide suffer from chronic diseases, i.e. five percent of the world’s population. There are half a million patients in Esk. Experts distinguish six thousand named chronic diseases. It is definitely a matter of genetic defects, most of them also caused by birth defects.

The article is in Czech

Tags: center families rare diseases inspiration Norway


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