Monika Kustermann

Monika is the mother of Victoria, who was diagnosed with Ogden syndrome in 2023 at the age of eight months. She is a postdoctoral researcher at the Medical University of Vienna (Austria). Since her daughter's diagnosis, she has used her scientific background to advance basic research into Ogden syndrome, as well as to bridge the gap between complex research and affected families. She is also the direct contact person for affected families in German-speaking countries.