Semmelweis University of Medicine
Department of Dermatology
Budapest, Hungary

Introducing DebRA Hungary

Dr. Sarolta Kárpáti
Dr. Márta Csikós
Dr. Mária Katona
Ágnes Czippán

• National Institute of Dermato - Venerology
• Heim Pal Childrens Hospital
• Semmelweis University of Medicine Dept. of Dermato - Venerology and Skin - Oncology

The aim of the National Epidermolysis Bullosa Center is to create the required conditions for the treatment of EB patients within the scope of National Institute of Dermato - Venerology; to organise cooperation of the special sections which provide the surgical, laryngological, stomatological, pediatrical, proctological service on a high level. Provide the necessary methods to diagnose EB, and in the future carry out the prenatal diagnosis. Make and keep contact with similar international institutions and in cooperation with them help those suffering from EB. Collect all the health and social possibilities that could help the quality of life of the patients.

The Epidermolysis Bullosa Foundation was formed in 1997, by a group of dermatologists and a mother of an affected child. The two main area of activity are to organise the special health care for EB patients, and to do research work determine defected genes which gives the background of this disease.

• educational work through information booklets and web site
• to maintain a close contact with patients and affected family members.
• promote and support scientific investigations, continuation courses and accessories of the laboratory
• social and financial support for EB families as far as possible.

We are working on building up the system of the multidisciplinal medical examination.
Most of the patients come ones in a year for revision, few of them more often. Home visit is avalaible for those, who have severe condition or difficulties with travelling.
An important change is that from 2004 January, thanks to DebRA Europe, there is a full time EB nurse, who is dealing with all kind of problems of the patients.

• EB Foundation has won at a competition, and in this way we can begin to carry through our plans to make life with EB more complete and comfortable.
• In our center gene determination of many EB variants are attainable.
• The second successful DNA based prenatal diagnosis was performed last year.
• With our assistance families are getting closer to each other, organise common programs and can exchange their experiences.
• We had a possibility to help a little girl with EBD to get a special bicycle, which helps to keep her mobile, and prevent weakness of the muscles.