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November 2023

Make Your Voice Heard! – Rare Barometer guide

The Rare Barometer team has crafted the „Make Your Voice Heard!“ guide for members of EURORDIS-Rare Diseases Europe to actively participate in Rare Barometer surveys, harness the experience and opinions of their communities, wield their survey results and meaningfully use them in their advocacy work and actions. 

Rare Barometer is a survey initiative that robustly collects the experiences and opinions of people living with a rare disease and their close family members on topics that directly affect them. This programme is run independently by EURORDIS-Rare Diseases Europe and is a not-for-profit initiative. It conducts 1 to 3 studies each year, and global online quantitative surveys are translated in 23 languages. Rare Barometer also hosts a survey panel of more than 20,000 people who agreed to receive email invitations to participate in surveys and studies conducted by EURORDIS-Rare Diseases Europe.

This guide offers an exclusive peek into the methodology behind Rare Barometer and equips member organisations with insights into:

  • Shaping Questionnaires: how to participate in the design of Rare Barometer global questionnaires.
  • Community Engagement: discover when and how you can motivate your community to participate in Rare Barometer survey, and reach enough respondents to receive your tailored survey results.
  • Utilising Survey Outcomes: explore avenues to leverage survey results for impactful actions at local, European, and global levels.
  • Accessing Resources: gain access to a wealth of valuable resources to further empower your organisation in participating in Rare Barometer surveys, or conduct your own surveys.

Download the guide here

This guide is one of several resources developed by EURORDIS-Rare Diseases Europe to help rare disease patient organisations build evidence-based advocacy and actions, among which:

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.