Twenty-eight people have found jobs with help from the Bulgarian Huntington's Association through a project that has now wrapped up, the association's social worker Rositsa Raykova told Bulgarian National Radio. Since 2024 the group has helped around 120-130 families in Burgas.
"Our last project was about finding people work," Raykova said.
In Burgas the association runs a drop-in service that advises patients and their families and points them to specialists. It offers similar services elsewhere in the region, and it's usually the patients' relatives who need the most help.
Raykova said rare diseases are mostly invisible to the people around a patient. The condition itself doesn't show on the outside, and that's where the trouble starts.
Boyka Vangelova is a psychotherapist who has spent three years with the association and has worked with rare-disease patients and their families for much longer. Specialists work with parents of children who have rare diagnoses or disabilities, both in groups and one-on-one, offering psychological and psychotherapeutic support.
Vangelova says patients can't get through the illness alone, and the people around them matter a lot, especially when there's no support at home. Help has to build on what a person already has to draw on, she added, and once one need is met, others usually come to light.
"There's always a need for this kind of professional support, where you won't be judged or left feeling powerless," the psychotherapist said.
The association brings in specialists depending on what's needed and looks for partners to work with. Consultations are held online or at its office at 24 Tsar Kaloyan Street in Burgas, and the association also visits people who can't leave their homes.