I founded ARVC-Selbsthilfe (an ARVC patient organisation) together with several familiy members in 2013 after the death of my daughter Judith at the age of fourteen. Since 2015 we are organising lectures of experts on ARVC once or twice a year. In 2018 I became chair of the non-profit organisation ARVC-Selbsthilfe e.V. and joined the ePAG of ERN GUARD-Heart.
In the meantime our organisation has about 170 members. Many joined after our big event in February 2019, the first German ARVC Symposium with many experts, lectures, poster-session and a panel discussion.
I am working as a gynecologist. Being a doctor helps me understand the heart disease and makes me able to “translate“ between doctors and patients.
My hobbies are photographing, classical music (concerts, opera), playing the violin, singing and travelling.
My big aim is to make people know ARVC and other genetic heart diseases and to prevent sudden cardiac death in other families.