Involving young people in heart disease and skeletal muscle disease research

Involving young people in heart disease and skeletal muscle disease research

Faculty of Medicine, VU University Amsterdam

Researchers at VU University‚Äôs Faculty of Medicine aim to inspire and enthuse, and above all show that a condition definitely need not be an impediment. This and more is what they intend by involving young people in their research. The researchers, who are working hard to cure congenital and inherited muscle diseases, are passionate about involving the young patients and their families. In this way, they can all jointly increase our understanding of heart disease and skeletal muscle disease and work towards solutions.

Their approach is threefold. The scientists attend patient contact days, meeting with patients to share scientific findings and exchange ideas. They also share animations and interviews with patients, other researchers, and physicians so as to show what it is like to live with a congenital mutation and what the latest findings are from their research. Finally, they organise national visits to the laboratory for patients and their family to show what they can measure in the lab and what new therapeutic strategies they are working on. These information days have even led to lessons being given at primary schools and to crowdfunding campaigns organised by parents of children with hereditary heart disease.

Websites:
Erfelijkehartziekten.nl
Spierziekten.nl
Young heart institute – board

Coordinator:
Josine de Winter, universitair hoofddocent

Other group members:
Jolanda van der Velden, professor
Diederik Kuster, universitair hoofddocent
Paul Wijnker, post-doc