Ingrid de Groot (The Netherlands, 1970) was working fulltime as a counsellor/ social worker for child protection services, when myositis eventually ended her professional career in 2015. She then decided to dedicate her time and energy on patient advocacy and patient work. She chairs the myositis working group of Spierziekten Nederland (Dutch patient association for neuromuscular disease). 3 years ago she joined the OMERACT (Outcome Measures in Rheumatology) Myositis Working Group as a Patient Research Partner and as such has co-authored articles about their patient centered research in PRO’s regarding quality of life, which were published in the Journal of Rheumatology. Recently her article about that study as first author was published in the Dutch Journal of Rheumatology. Other projects she is involved in are EULAR ( Patient Research Partner and member of the study group for collaborative research) and finally she is member of a patient board which evaluates grant applications for research in neuromuscular disease for Prinses Beatrix Spierfonds.