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Rainer is founder of DEBRA Austria and has been Executive Director for nearly 25 years. He served as President of DEBRA International for 4 years and is still president of Pro Rare Austria, the national umbrella organisation for rare diseases.

Rainer has two daughters and lives in Vienna, Austria. When his first daughter was born in 1993 with a severe form of RDEB his life changed suddenly. At first, he was looking for ways to help his child, later he supported the national and then the international EB patient community in many ways.

On his journey he has raised millions of Euros for medical care, national and international EB research, psychological and social counselling and emergency assistance for EB families. One of his greatest successes was the establishment of a special clinic for EB. The EB-Haus 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-Haus 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.

Prior to his rare disease work, Rainer worked in various industries, such as management consulting, insurance, and telecom. He has graduate degrees from the University Vienna and the Vienna University of Economics and Business.

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