In my PhD research, I am interested in the roles of rare disease patient organisations in the appraisal of orphan medicines. Such appraisals bring together the interests from stakeholders from different actors, including the pharmaceutical and biotechnology industry, regulators, medical experts, and patients. Orphan medicines are often highly expensive, giving rise to debates over their cost-effectiveness and their burden on national healthcare systems. As patient organisations can in differing ways be involved in research and development of orphan medicines, their role in the subsequent appraisal of such medicines can become contested. In my research, I investigate the ways in which patient organisations navigate their position at the intersection of different interests and in relation to other stakeholders in the medicines appraisal process.
Supervisors: Prof. Steve Sturdy (UoE) and Prof. Ine Van Hoyweghen (KU Leuven)
I hold a BA in Arts and Culture, with a specialisation in Cultures of Knowledge and Technology, and an MSc by Research in Cultures of Arts, Science and Technology, both from Maastricht University (Netherlands).