This year, International Rare Disease Day will be marked with an open discussion and a screening in Burgas. The event “Rare Voices” is organized by the Bulgarian Huntington's Association - Burgas branch, and will be held on February 27, Friday, at 2:00 PM in the “Petya Dubarova” hall of the “Morsko Casino” Cultural Center.

It will include an open discussion focused on the needs for support of people living with rare diagnoses, as well as on the role of the local community in building a more informed, engaged, and empathetic environment.

Participants in the discussion will be: Daniel Borisov – director of the municipal directorate “Healthcare and Social Activities”, Diyan Gospodiinov – from the Association “Young Doctors”-Burgas, and patients living with rare diseases. The participants will share personal and professional experience, outline the challenges faced by people with rare diseases, and discuss the possibilities for support at the local level.

After the discussion, a film dedicated to life with a rare diagnosis will be screened. The screening will provide an opportunity for a deeper experience of the topic through a personal story and will draw attention to the human dimensions of life with a rare disease – beyond statistics and medical terms.

Admission to the event is free.

“Rare diseases often remain invisible to society, but for the affected families they are everyday life. With the event “Rare Voices” we want to give space to these people – to be heard, understood, and supported. The community is a key part of coping,” shares Mariana Georgieva – chair of the Bulgarian Huntington's Association - Burgas branch.

In Bulgaria, between 400,000 and 500,000 people live with rare diseases, and most of them face not only medical but also serious social and psychological challenges.

The event “Rare Voices” is part of the initiatives with which the Bulgarian Huntington's Association marks International Rare Disease Day and directs public attention to the need for sustainable models of support and more active community engagement.