Epidermolysis Bullosa Care in Germany
Until 2003, no structures existed in Germany for special care of patients with rare diseases, such as epidermolysis bullosa (EB). At that point, the Federal Ministry of Education and Research…
Epidermolysis Bullosa in France: Management in the National Reference Center for Genodermatosis
For more than 20 years, the department of dermatology in the Necker Enfants Malades Hospital (Paris) has been organizing the coordination of an epidermolysis bullosa–specific multidisciplinary management. The French Ministry…
Care of Epidermolysis Bullosa in Ireland
Advances in the medical care of epidermolysis bullosa (EB) have led to the development of National Service Centers for EB in many countries worldwide. The exemplary model of care to…
Epidermolysis Bullosa Care in the United Kingdom
There are approximately 5,000 people with epidermolysis bullosa (EB) in the United Kingdom. Since 2002, EB services in England have been nationally funded by the National Commissioning Group, which also…
Epidermolysis Bullosa Care in Mexico
Epidermolysis bullosa (EB) in Mexico continues to be a rare genodermatosis that is still unknown for most of the health care professionals in the country. The spirit of DebRA MEXICO…
Epidermolysis Bullosa Care in Canada
Based on the described prevalence and size of the population, approximately 300 to 500 patients with epidermolysis bullosa (EB) reside in Canada. There are specific challenges faced by patients and…
Epidermolysis Bullosa Care in the United States
There is a wide range of health care delivery systems within the United States for patients with epidermolysis bullosa (EB). They range from nonexistent, primarily because of remote geographic locations,…
Growth and Pubertal Delay in Patients with Epidermolysis Bullosa
Puberty is the acquisition of secondary sexual characteristics, associated with a growth spurt, resulting in the attainment of reproductive function and final adult height. Delayed puberty is defined as the…
Bone Marrow Stem Cell Therapy for Recessive Dystrophic Epidermolysis Bullosa
Recessive dystrophic epidermolysis bullosa (RDEB) is a severe inherited blistering disease caused by mutations in the type VII collagen gene, resulting in defective anchoring fibrils at the epidermal-dermal junction. At…
Interdisciplinary Management of Epidermolysis Bullosa in the Public Setting: The Netherlands as a Model of Care
An interdisciplinary team approach, in which the treatment can be individualized to each patient and his or her family and tailored to the severity of the disease, is most beneficial…
