Joep Welling is the former President of the Dutch patient organization for systemic autoimmune diseases (NVLE; 2012-2015) and is a consultant for the Scleroderma Framed Foundation. Starting in 2010, he has been actively involved as a patient representative and advocate in many national and international projects aiming to improve research and health care for patients with scleroderma, including the Patient Research Partner project of the European League Against Rheumatism (EULAR). Joep is no longer actively employed, but instead puts his available energy into advocacy for the NVLE and the provision of information about scleroderma to professionals and patients. Patient participation in research (SPIN) and self-management are now his focus points. His professional background as a nurse (specializations intensive care and anaesthesiology), infection control practitioner, as well as his work as an IT consultant for pharmacies and a pharmaceutical wholesaler, helps him achieve these goals and gain more attention for scleroderma.