Shumen Marked Rare Disease Day

Shumen is one of 25 Bulgarian cities marking February 28 – World Rare Disease Day. This year, the initiative is under the motto: “More Than You Can Imagine!”

In the park next to the Shumen Municipality building, a resting area with a table and benches was inaugurated, funded by the “Lazar Todorov” Foundation. This is the second joint initiative of the foundation and the local branch of the National Alliance for People with Rare Diseases. Last year, a bench symbolizing “invisible people” was installed along the pedestrian alley near the Lajos Kossuth monument.

The opening was attended by the Mayor of Shumen, Prof. Hristo Hristov, and Deputy Minister of Labor and Social Policy Natalia Efremova, who committed to discussing with her colleagues from the Ministry of Health the issue of periodically disappearing medicines for people with rare diseases. This concern was raised by patients from Shumen who have faced shortages of medications in recent years.

In Bulgaria, there are over 400,000 people with rare diseases, but it is difficult to know how many live in Shumen and the region, as there is no national registry, said Petinka Banova, coordinator for Shumen Province at the National Alliance for People with Rare Diseases. Other challenges include obtaining a diagnosis and the lack of specialists to identify these diseases.

Regarding the registry, Deputy Minister Natalia Efremova noted that in 2023 the National Assembly reviewed legislation related to people with rare diseases. She expressed confidence that, now that Bulgaria has a regular government, her colleagues in the health system will fulfill their commitment to prepare proposals for legislative changes in this area.

After the official opening ceremony of the new resting area in the Park near the Freedom Monument, the tradition of releasing colorful balloons into the sky on Rare Disease Day was observed.