health
March 6, 2026
41 People in Serbia Have Epidermolysis Bullosa: State Should Provide More Funds for Rare Disease Treatment
Epidermolysis bullosa is a severe, rare skin disease in which the skin is very delicate and sensitive, so damage occurs with the slightest touch or pressure. It is caused by gene mutations, and patients with this disease are also called 'butterfly children'.
TL;DR
- Epidermolysis bullosa (EB) is a rare genetic skin disease causing extreme skin fragility.
- Patients with EB are referred to as 'butterfly children'.
- Serbia has 41 registered EB patients.
- There is a call for increased state funding for the treatment of rare diseases in Serbia.
- Innovative gene therapies are now available, targeting the cause of EB, marking a shift from palliative care.
- Eight Serbian patients are currently receiving one of the available therapies.
- A working group is being formed to develop a comprehensive program for rare diseases.
- The Ministry of Health is working to ensure adequate therapy for all rare disease patients.
- Serbia currently treats over 40 different rare diseases for 930 patients with a budget of 10.2 billion dinars.
Continue reading the original article