The new chairman of the Parliamentary Committee on He alth, Dr. Daniela Daritkova, was one of the official guests at the Charity Ball, organized by the Association of Medical Students in Bulgaria and the National Alliance of People with Rare Diseases. Here is what Dr. Daritkova shared:
“It is an honor for me that on my first day as chairman of the He alth Care Committee in this National Assembly, I am at this holiday. Over the years, we have taken our small steps in providing better treatment for people with rare diseases. There are new regulatory documents that improve their access to treatment, there is a new clinical pathway for the treatment of one of these diseases, and the creation of a registry for rare diseases is pending. I know all this is not enough for people who have such diseases, but we will really continue to be with them and support them. We will also work to introduce European practices in their treatment.”
The event was also attended by the Deputy Ministers of He alth Dr. Adam Persenski and Dr. Vanyo Sharkov, highly respected doctors from Sofia and the country, dozens of medical students, parents and children with rare diseases. The event was dedicated to helping children born and living with Williams Syndrome. The chairman of the association of the same name, Dilyana Sarivanova, who is the mother of a girl with this disease, shared the following: "We have found 10 children with this diagnosis so far. There is no official registry, we find ourselves, unite and support. The children study in different schools and cope as best they can. When the mother of such a child hears this diagnosis, she goes into shock. But the truth is that these kids have great opportunities and we need to work with them to develop them.”
Rare diseases are more than 6,000 in number, so experts say that it may actually turn out that each of us has such a disease. The progress of medicine has led to the fact that the causes associated with all diseases are investigated more and more thoroughly, and from this it comes to the point that a variety of new diseases are discovered that affect a small circle of people.
“In fact, they were considered part of mass diseases that affect more people at a given time in their lives. This, combined with the increasingly large-scale developments to discover new treatments for rare diseases, has resulted in a tendency for their number to increase and the groups of people who are affected to decrease. Today, it is considered that we are talking about a rare disease when it affects less than 1 person per 2000 people in an EU country.
In our country, about 400,000 people are affected by rare diseases - not only patients, but also their families. This is a WHO statistic," added Vladimir Tomov, chairman of the National Alliance of People with Rare Diseases.
