Fighting with all my energy for my son

The story of Fraukje

My husband died due to heartfailure because of ARVC. Age 42. 3,5 years ago, our son was also diagnosed with ARVC. Age 13. I want for him a longet and better life than my husband had. So I will not stop spending all my energy in the German patient advocacy, translating documents to get all German patients into a European ARVC registry, to set up new networks of scientists, to support a great Dutch scientist: Rogier Veltrop.