Speak Up. Listen Up. Follow-Up guide: A Brief Guide for Rare Disease Patient Organisations on How to Listen to The Community

EURODIS and the rare disease patient community co-developed a guide to support their patients and patient organizations to understand how to best capture and act on the insights of the rare disease patient community, ultimately ensuring that their voice and lived experience is at the heart of what the patient organization does. The guide is structured into 8 steps which range from defining organization’s objectives to selecting the best approach to collect the data you need and analyzing your community’s feedback. Read more here.
Source: Eurodis