A short overview about the success story of EB care in Salzburg
Researchers from the EB House Austria have recently published a review article in the Journal of the German Society of Dermatology about the 15 years history of this specialized center for EB patients and the pioneering work for EB care in Salzburg. They summarize the development of the house from its beginnings up to the recent designation as a Center of Expertise for rare skin diseases. This article also mentions the persons who have laid the ground for EB research and care in Salzburg and who are currently leading the four pillars of the EB House Austria.
Patients with rare diseases do not easily find experienced medical personnel. EB has first been recognized in Austria more than 30 years ago. One of the leading doctors was the former Head of the University Hospital for Dermatology in Salzburg, Helmut Hintner, who was dedicated to understand the cause of this complex disease and to provide help to affected people. A major milestone in the early 90s was the development of a fast and precise EB diagnostic, which made Salzburg a reference center for EB patients. Through the close contact between dermatologists and scientists with only a few EB patients and parents of children with EB, a network arose to support each other. In 1995, the patient organisation DEBRA Austria was founded by this small network, with the primary goal to offer help, counselling and information to people affected by EB in Austria and beyond.
Treating EB is challenging because of its rarity, broad spectrum of clinical symptoms and accompanying complications. Thus, it became clear that a multidisciplinary team is a prerequisite for optimal support of EB patients. After many years of joint efforts, the worldwide first specialized clinic for EB opened its doors in 2005 in Salzburg.
The EB House Austria combines the four major aspects essential for progress in EB care that physically share the same space and thus facilitate and encourage interdisciplinary communication:
i) an academy for advanced training and exchange of medical staff, patients and families
ii) an outpatient clinic with specialized medical staff for patient care
iii) a research laboratory conducting research for understanding the causes of EB, and for developing therapeutic strategies
iv) a study center to investigate new therapeutic approaches in patients
This unique concept is indispensable to optimally support people with rare diseases such as EB in improving their quality of life and serves as a global model.
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