Dubrovnik Declaration on Medical Care for Bullous Epidermolysis (EB)

If a patient suffering from EB needs medical advice or treatment, he or she is entitled to the best available care of qualified and experienced medical staff.

Members of the National International Medical DEBRA teams will use their experience in providing medical care for all the problems and all the conditions affecting those who seek medical attention and help.

Physicians who become members of the international medical team DEBRA have gone through extensive evaluations of their medical education and skills and have proven their commitment to high standards of ethical behavior.

This assessment is carried out according to standards established so that patients receive the best possible surgical and medical care. According to international health declarations, patients are entitled to respect and treatment in accordance with their religious and cultural attitudes.

European patients suffering from EB have the right to require medical examination and treatment from any doctor and healthcare provider recognized by DEBRA, in accordance with reciprocal health agreements between European countries.

Each patient should have the following rights:

During childhood (age 0-16 years)

The patient should be provided with access:

✔ Prenatal diagnosis
✔ Diagnosis
✔ Home visits by specialized nurses
✔ Regular specialist multidisciplinary clinical reviews every six months
✔ Education, social counseling and support
✔Free wrist bands
✔ Foods for specialist medical nutrition, including vitamins and minerals
✔ Endocrinologist
✔ Ophthalmologist
✔ Spezialists for pain control
✔ To a social worker
✔ Counseling and psychiatric support
✔ Working therapy
✔ Psychotherapy
✔ Urgent access to a specialist EB unit

Specialist Unit for EB

In order to provide these services, it is necessary to organize and finance EB departments at national level. They must be located close to the multidisciplinary care center.

Adults (16+ years)

Each such unit should be secured:

✔ Review of specialized nurses every 6 months including body search for possible skin cancer detection
✔ once a year review of a EB specialist unit, including a review of a dermatologist, a plastic surgeon, a dietician, a dentist and a body scan for possible skin cancer detection
✔ Hospital accommodation
✔ Private Ambulance Review
✔ Possibility of education
✔ Support means
✔ Available curtains and aids for everyday life
✔ Telephone help line
Such a unit should also be the base for a specialized nurse and other EB staff, and should be in regular communication with other specialized EB units. Cavtat, 14. listopada 2001.