On Friday, September 19, 2025, hundreds of visitors took the opportunity to take a look behind the scenes of the Eb-Haus Austria at the open house. Whether big or small – there was exciting things to discover for everyone.
The multidisciplinary team of outpatient clinic, research, study center and academy presented the diverse activities related to the care of people with epidermolysis bullosa (eb). On the basis of interactive stations, it was impressively showed how researching, treating and supporting this worldwide unique facility. The hands-on stations were particularly popular: Here, visitors were able to playfully understand how the skin is built, why EB is created and what role gen therapy could play in the future. With chocolate as a vivid tool, researchers explained the basics of inheritance theory and thus delighted young and old.
In addition, the program offered exciting insights into the everyday life of EB-affected: short films, lectures and open questions with the team of the EB-Haus Austria gave visitors a deeper understanding of the challenges with which “butterfly children” live, and for the important role of the patient organization Debra Austria.
Epidermolysis bulllosa (EB) is a rare, innate, serious and currently (yet) not curable skin disease. Since her skin is as vulnerable as the wings of a butterfly, affected people have become known as “butterfly children”. The EB-Haus Austria Austria Austria, initiated by the non-profit patient organization Debra Austria and funded with donations, at the Salzburg University Hospital is the world’s first and so far the only special clinic for those affected. Excellent clinical support, clinical tests of promising therapy options, training and further education and with the EB Research Institute (EB RI) are also combined in targeted research on relief and healing approaches under one roof. This year the two celebrated a special double anniversary for “butterfly children”: Debra Austria turns 30, the EB-Haus Austria turns out 20!
Media discussion as a prelude
At the start of the open day in the EB-Haus Austria, a press interview took place. Media representatives had the opportunity to gain insights into the work of the team of experts on site and to have discussions with representatives of Debra Austria, the EB-Haus Austria and the EB RI. “”The great interest in the open day shows us how important education and awareness of rare diseases like EB are. We are pleased that we were able to inspire so many people for our work. Debra Austria has been committed to people with epidermolysis bullosa for 30 years-and the EB-Haus Austria has been the heart of these efforts for 20 years
“, Emphasized Dr. Rainer Riedl, chairman and co-founder Debra Austria and initiator of the EB-Haus Austria.
Dr.in Sophie Kitzmüller, Head of EB-Academy at the EB-Haus Austria: “The care of EB-affected and their families requires holistic physical, mental and family care. This is exactly what-financed by donations-has been offered in the EB-Haus Austria for 20 years. We support those affected in the best possible way
.“
The current state of research was also the focus: “The mission of our team is to significantly improve the quality of life of EB patients through the provision of effective therapies. We rely on three things: our deep understanding of the disease, top research and strategic collaborations in and far beyond Austria
. Together with doctors and researchers worldwide-but also across the function within the EB-Haus Austria-we transform scientific know-how into the greatest possible benefits for patients, ”says Dr.in Hana Cernecka, Head of the EB RI.
Via the EB-Haus Austria
The EB-Haus Austria in Salzburg is the world’s first special clinic for patients with epidermolysis bullosa. Since its opening in 2005, it has combined medical support, research, study center and training work under one roof. The aim is to offer the best possible treatment and at the same time develop innovative therapies for the future. www.eb-haus.org
Debra Austria, help with epidermolysis bulllosa (eb):
Debra Austria was founded in 1995 as a self -help group by affected people, relatives and doctors with the aim of organizing exchange of experiences and help for people with EB. The association has set itself the goal of enabling competent medical care for the “butterfly children” and increasing the chance of healing through targeted, first -class research. At the initiative of Debra Austria and with donations, the world’s only special clinic for “butterfly children”-the EB-Haus Austria-was opened at the Salzburg University Hospital in 2005 and has been in operation since then. In 2017, this institution was designed for the first Austrian expertise center for rare diseases and in 2020 by the European umbrella organization for rare diseases (EURORDIS) with the Black Pearl Award for Holistic Care. www.schmetterlingskinder.at
Event: Open day, Friday, September 19, 2025, 10 a.m. to 3 p.m., EB-Haus Austria, University Clinic for Dermatology, State Hospital Salzburg, Müllner Hauptstraße 48, 5020 Salzburg