Dr Rainer Riedl

Institution(s): DEBRA Austria

Function: Patient Representative

What are your own areas of work, and what insights do these give you on EB? 

I am founder of DEBRA Austria and have been Executive Director for nearly 25 years. I served as President of DEBRA International for 4 years and I was president of Pro Rare Austria, the national umbrella organisation for rare diseases. I have two daughters and live in Vienna, Austria. When my first daughter was born in 1993 with a severe form of RDEB my life changed suddenly. At first, I was looking for ways to help my child, later I supported the national and then the international EB patient community in many ways.
On my journey I have raised millions of Euros for medical care, national and international EB research, psychological and social counselling and emergency assistance for EB families. One of my greatest successes was the establishment of a special clinic for EB. The EB House Austria was opened in 2005 at Salzburg University Hospital and combines an outpatient clinic, a research unit, a clinical study centre and an academy under one roof. The EB House Austria was awarded the Black Pearl Award by EURORDIS for holistic care in 2020 and is considered an international beacon project in the field of rare diseases.