Carola Ossenkopp

Carola Ossenkopp

I am a mother of a teenage son with a congenital heart defect. I fouded a self help group for children with CHD  and have realized different projects for the German umbrella organization BVHK., like a  brochure on nutrition for children with congenital heart defects.  Furthermore,  For my  Ph.D research project in Social Work, I conducted a nationwide online survey on the use of self-help groups for congenital heart defects in Germany.

Roles in BVHK

Roles in the European Patient Advocacy Group
ePAG member since 2023

Goal to achieve by being an ePAG
I have been active in advising families of children with CHD for over ten years and have always been seeking to raising awareness for children with this health problem and for their families. A congenital  heart desease can be a  challenge for the whole family. My aim is to lobby for those families  in order to provide them with the support they need.