Patient-based Registry

CFC Polska

The cardio-facio-cutaneous syndrome group in Poland (CFC Syndrome Polska) was created on Facebook in response to parents of children with CFC contacting Anna Krupinskaya, who posted information about her son, Wojtek, on her profile. . In the group, parents exchange advice, contacts to doctors and general knowledge about the disease. The parents expertise also supports doctors, who continuously learn from the parents. The Facebook group currently consists of ca. 20 members.

Main contacts

Photo of Anna Krupińska
Anna Krupińska