Hereditary EB is a rare skin disease that occurs worldwide and in all racial groups. There are currently 60 families affected and about 150 patients with EB under care in Hungary. The care of patients with EB in Hungary is discussed.
The epidemiologic characteristics of epidermolysis bullosa in Hungary
Hereditary epidermolysis bullosa (EB) is a rare skin disease that occurs worldwide and in all racial groups. European and North American surveys show that the incidence is 1 between 50,000 and 100,000 live births and its prevalence is approximately 25× 10 −6 to 50 × 10 −6 , which reflects the cumulative frequency of EB; however, it can vary according to subtypes and subpopulations.
There are currently 60 families affected by EB and about 150 patients with EB under care in Hungary, a Central Eastern European country of 10 million inhabitants. These figures correspond fairly well to international data.
Fifty-one percent of Hungarian patients with EB are diagnosed with EB simplex (EBS); junctional EB (JEB) accounts for only 3% of cases. The frequency of dominant dystrophic EB (DEB) is 33%, and recessive DEB occurs in 13% of EB patients.
Organizations representing EB patients in Hungary
National Epidermolysis Bullosa Center: DebRA Hungary
The National Epidermolysis Bullosa Center was founded in 1995, with the aim of creating a special environment for the treatment and care of EB patients. The Dermatological Clinic of Semmelweis University was among the founding organizations, and the Center still operates from there today. The EB Center, now called DebRA (Dystrophic Epidermolysis Bullosa Research Association) Hungary, later became part of DebRA Europe. Our official Web site is http://www.debra.hu .
The coworkers of DebRA Hungary have organized an interdisciplinary cooperation to provide high-quality care for patients with EB in the fields of internal medicine, surgery, otorhinolaryngology, dentistry, pediatrics, and dietetics. DebRA Hungary established the background for the clinical, histologic, and molecular genetic diagnostics of EB in Hungary, and also provides preventive DNA-based prenatal diagnostics.
The Center had the opportunity to employ a DebRA nurse from 2004 to 2008, which greatly contributed to the high-quality care of patients. The training of the DebRA nurse took place in London, with the support of DebRA Europe.
Epidermolysis Bullosa Foundation
DebRA Hungary is supported and financed by the Epidermolysis Bullosa Foundation, founded in 1997. The aims of the Foundation are to organize special health care that meets the needs of patients with EB, perform research in genetics, provide professional and public education about EB, organize social activities, and provide social care for patients with EB.
Organizations representing EB patients in Hungary
National Epidermolysis Bullosa Center: DebRA Hungary
The National Epidermolysis Bullosa Center was founded in 1995, with the aim of creating a special environment for the treatment and care of EB patients. The Dermatological Clinic of Semmelweis University was among the founding organizations, and the Center still operates from there today. The EB Center, now called DebRA (Dystrophic Epidermolysis Bullosa Research Association) Hungary, later became part of DebRA Europe. Our official Web site is http://www.debra.hu .
The coworkers of DebRA Hungary have organized an interdisciplinary cooperation to provide high-quality care for patients with EB in the fields of internal medicine, surgery, otorhinolaryngology, dentistry, pediatrics, and dietetics. DebRA Hungary established the background for the clinical, histologic, and molecular genetic diagnostics of EB in Hungary, and also provides preventive DNA-based prenatal diagnostics.
The Center had the opportunity to employ a DebRA nurse from 2004 to 2008, which greatly contributed to the high-quality care of patients. The training of the DebRA nurse took place in London, with the support of DebRA Europe.
Epidermolysis Bullosa Foundation
DebRA Hungary is supported and financed by the Epidermolysis Bullosa Foundation, founded in 1997. The aims of the Foundation are to organize special health care that meets the needs of patients with EB, perform research in genetics, provide professional and public education about EB, organize social activities, and provide social care for patients with EB.
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Bone Marrow Stem Cell Therapy for Recessive Dystrophic Epidermolysis Bullosa
Epidermolysis Bullosa in France: Management in the National Reference Center for Genodermatosis
Epidermolysis Bullosa Care in Israel
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