Stefan joined the Belgian Cystic Fibrosis Association in 2016 as CEO to further professionalize the organization. In 2018 he joined the board of Cystic Fibrosis Europe as Secretary and chairman of the ‘Policy and Public Interest Group’ and in 2019 he became chairman of the board of RaDiOrg, Rare Diseases Organization Belgium, the Belgian Alliance organization for all patients and patient associations in the field of rare diseases. In these positions Stefan plays a key role in the growing involvement of patients representatives and patients associations as stakeholders and partners in the evolving health environment both in Belgium as on a European level. He advocates for the ‘Patient expert’ as a collaborating partner from drug development, standards of care, reimbursement and improvement of personalized care in the field of rare diseases.
