Seeing Is Believing: Invisibility Exacerbates Inequality for Patients Living with Rare Disease

Abstract

AT the 11 th European Conference on Rare Diseases (ECRD), held virtually between 27 th June and 1 st July as an official event of the 2022 French Presidency of the Council of the European Union (EU), experts discussed how invisibility in rare disease acts as a roadblock to reducing inequalities. The session, chaired by Ana Rath, Orphanet, French National Institute for Health and Medical Research (Inserm), France, provided insight into the inequalities, inequities, and injustice that people living with rare disease (PLWRD) face, referencing the United Nations (UN) Resolution on PLWRD 2021 1 and the UN Sustainable Development Goals (SDG). 2 The panel also highlighted how we can act at the local, regional, national, and global levels to bring rare diseases into focus, affect change, and start to bridge the inequality gaps.