Department of Dermatology, EB House Austria, Paracelsus Medical University Salzburg, Salzburg, Austria.
Dermatol Clin. 2010 Apr;28(2):415-20, xv. doi: 10.1016/j.det.2010.02.008.
The Epidermolysis Bullosa (EB) House Austria is a special unit for the multidisciplinary management of children and adults with EB. Major advances in EB care have been made possible by a multidisciplinary approach including most of the medical specialties offered at the General Hospital in Salzburg. The EB House Austria is independently funded by the support group DEBRA Austria. As the EB House Austria fulfills all criteria for a European Union reference center, as stated by the Rare Disease Task Force in 2005, the authors hope that in the near future the EB House Austria will be accepted as such on a European Union level and that they can soon get financial support from this side. This support would be of even more importance in the moment when a causative cure, which is of course supposed to be a cost-intensive gene therapy, is available.
奥地利大疱性表皮松解症(EB)之家是一个专门的单位,用于多学科管理患有 EB 的儿童和成人。通过多学科方法,包括萨尔茨堡总医院提供的大多数医学专业,EB 护理取得了重大进展。奥地利 DEBRA 支持小组独立资助 EB 之家奥地利。由于 EB 之家奥地利符合 2005 年罕见病工作组规定的欧盟参考中心的所有标准,作者希望在不久的将来,EB 之家奥地利将在欧盟层面上被认可为这样的中心,并且他们可以很快从这方面获得财务支持。当一种有治疗效果的方法(当然,这应该是一种成本高昂的基因治疗)可用时,这种支持将更加重要。