fig1

Figure 1. Distribution of respondents to the survey and their affiliations to IRDiRC Constituent and Scientific Committees. The response rate from the Patient Advocates Constituent Committee (PACC, 63%), Funders Constituent Committee (FCC, 59%), and Therapies Scientific Committee (TSC, 58%) were the highest, with an overall participation rate of 46%. IRDiRC: International Rare Diseases Research Consortium.