Association Epidermolysis Bullosa is a new Bulgarian patient organization, created in July 2023 by patients and parents of EB children. Most of the organizers have been active in previous patient organizations for the disease. Chairman of AEB is Elena Eneva with board members Nezabravka Asenova and Tcvetelina Vlashka.
There are almost 100 patients with EB in the country. Every year there are 2 - 4 newborns with the disease. There is no specialized Centre for EB Care, but there are some very competent, engaged and caring doctors in some of the local hospitals.
The organizations efforts 10 years ago had results. Since 2014 the National Health Insurance Fund pays for the specialized dressings, but the amount is not relevant to the needs of the people with more severe disease and so AEB has decided to be active again. Since June 2023, children under 18 can receive Filsuvez Gel treatment for free.
There has already been the organization a national meeting of EB families. One of the members of AEB is a nurse who has visited and advised the parents of the new babies born with EB this year.
The goals of AEB are to negotiate bigger quantities of dressings with NHIF, to help the better organization of diagnostics, treatment and hospital care, including taking part in the Rare Disease Work Group in the Ministry of Health. AEB work to spread awareness about EB and to support patients and their families in the difficulties of life with EB. There are plans for a new national pediatric hospital in which they aim to have a specialized EB room furnished with a bath tube for dressing changes.
AEB are very glad to be a part of the International DEBRA family again!