The event was held in the city of Yambol, hosted by the local information office of the Delegation of Bulgarian Socialists and the Complex for the Provision of Social Services to Adults and Children, under the title “Rare Nuances in the Palette of Life”.
As a member of the EP Committee on Public Health and head of the Delegation of Bulgarian Socialists, Christian Vigenin emphasized that the meaning of this meeting is to direct public attention in a way that will not neglect the problems and will not leave those suffering from rare diseases unnoticed. “We must live in a society of solidarity, in which the weaker receives the necessary support and care,“ noted Vigenin. He stated that this initiative is not a one-off, but the next one, organized by the Delegation of Bulgarian Socialists and dedicated to specific problems in the field of public health and prevention. He recalled the charity event from December last year, dedicated to children with hearing problems, and announced that an initiative dedicated to children and young people on the autism spectrum is planned in Sofia at the end of April.
Vigenin noted that one of the pressing problems in Bulgaria, as a smaller European country, is unfortunately the limited access to life-sustaining medications and therapy. While the development of new health technologies for early diagnosis and new therapies at the European level is an undoubted success, access to them at the national level remains problematic and requires serious resources, Vigenin stressed.
“We are talking about nearly 8,000 rare diseases in the EU - a number that also requires better coordination and unification of the efforts of the member states towards providing adequate healthcare.“ In this regard, the Group of Socialists and Democrats in the EP is preparing a series of initiatives specifically concerning rare diseases and placing them in the focus of pan-European efforts. One of the proposals envisages a significant increase in European funds earmarked for scientific research, specific therapies, joint health projects and the exchange of good practices. Specifically, there is talk of increasing the total funds for healthcare to 25 billion euros in the next 7-year EU budget — from the current 5 billion euros, Vigenin noted.
The introduction of additional rules for the application of artificial intelligence in scientific research is another major issue being discussed at the European legislative level. Innovative health technologies will certainly ensure the implementation of more effective diagnostics and supportive therapies and care, which is particularly important for rare diseases, he stressed.
For her part, Tsvetelina Penkova noted that the discussion is a clear sign of a long-term commitment that will lead to concrete solutions with measurable added value for children and young people with rare diseases and their families. She announced that statistics are scarce, but according to available public information — in our country, nearly 370,000 people live with rare diseases.
„But this is not just a statistic. The diagnosis is a medical problem, but also a serious social and psychological challenge that affects thousands of families,“ said Penkova.
As for the provision of specialized care, she emphasized that currently in Bulgaria there are 34 expert centers for rare diseases, located in 13 university hospitals in the cities of Sofia, Plovdiv, Varna and Pleven. Only seven of these centers are full members of the European Reference Networks. However, Bulgarian patients with rare diseases remain deprived of equal access to 19 of the 24 main areas of healthcare that the EU defines as priorities, she pointed out.
On the issue related to the shortage of life-sustaining medicines, Penkova emphasized the need for targeted legislative and administrative measures to facilitate access to medicines from other countries. This is related precisely to the structuring of deeper cooperation within the EU.
She pointed out that fair and equal opportunities for participation in society are also related to undertaking those reforms in the education system that will promote a truly inclusive environment and guarantee conditions for more fulfilling work. Penkova believes that overcoming stigma and prejudice against the different and vulnerable can be achieved precisely through public conversation with all stakeholders and responsible institutions at all levels.
The discussion was attended by representatives of the local government in the person of the Deputy Mayor of Yambol Municipality Encho Kiryazov, the Deputy Mayor of Tundzha Municipality Stoyan Petkov, the MP from the Bulgarian Socialist Party – OL Krasimir Yordanov, Dr. Nedyalka Petkova-Vlahova, the head of the Emergency Department of the Yambol State Hospital Dr. Rayno Georgiev, educators, psychologists, representatives of educational institutions and social organizations, children and parents.
For contact with the Group of the Progressive Alliance of Socialists and Democrats in the EP: https://www.socialistsanddemocrats.eu/
