Prof. Helmut Hintner

Emeritus Director of Dermatology Salzburg (Austria). Prof. Hintner has established a facility in Salzburg for patients with “butterfly disease”. He continues to work on improving the care of rare disease patients and is also active in the advisory bodies of the National Action Plan for People with Rare Diseases (NAMSE) in Brussels.

Mrs. PD Dr. Katharina Hohenfellner

Head of Pediatric Nephrology at the Children’s Hospital in Rosenheim.
Together with the self-help group „Leben-eben“ and Prof. Harms, she established the „interdisciplinary cystinosis clinic“ for these patients and supports the foundation and its projects.

Mr. Alexander Huber

Professional mountaineer. He supports the foundation with his person/brand.

Mrs. Dr. Uta Nennstiel-Ratzel

President of the German Society for Newborn Screening. She works in the Bavarian State Office for Health and Food Safety and is responsible for health reporting, epidemiology, social medicine, child health and for the screening center.

Mrs. Ulrike Treikauskas

Ms. Treikauskas is a pediatrician and is currently finishing her training in pediatric nephrology. She is also involved in the cystinosis clinic as well as in the different projects.