One of the most interesting presentations On March 18th 2020, at the Council of National Alliances was the RareBarometer study results. To best respond to growing advocacy role of patients organizations and to achieve a high quality evidence-base from people living with a rare disease, the EURORDIS Rare Barometer Programme will rely heavily on patient engagement to inform policy makers about patient perspective by carrying out surveys, focus groups, individual face-to-face interviews and other opinion-gathering methods to gain firsthand feedback from patients.