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July 2022

Speak Up. Listen Up. Follow-Up guide: A brief guide for rare disease patient organisations on how to listen to the community

To understand and represent the priorities, needs and preferences of your rare disease patient community, you must first gather their input; secondly, analyse the results of your ‘listening exercise’ and; finally use them to guide your work.

This is indeed a central part of your role as a patient representative, i.e., capturing your patient community needs and experiences and relaying these findings to clinicians, hospital managers and decision-makers. But it is a very challenging task too!

EURODIS and the rare disease patient community co-developed a guide to support you and your patient organisation to understand how to best capture and act on the insights of your rare disease patient community, ultimately ensuring that their voice and lived experience are at the heart of what your patient organisation does.

The guide is structured into 8 steps which range from defining your objectives, to selecting the best approach to collect the data you need and analysing your community’s feedback. It is full of practical tips and complementary resources designed to make your life easier! Among them you will find:


Open Academy course

Survey Design E-learning course

Survey design for rare disease patient organisations

This online course is based on the EURORDIS Guide ‘A brief guide for rare disease patient organisation on how to listen to the community’and has been made possible thanks to the generous support of Boston Scientific Foundation Europe.