About Us
Inform policy and decision makers on what it really means to live with a rare disease
Register to the Rare Barometer panel to participate in our surveys and receive their results!
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people have registered to Rare Barometer
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Register to Rare Barometer
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Receive invitations to surveys
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Take part in the survey
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Receive results
Who can join?
This global survey initiative is open to anyone from any country in the world who is living with a rare disease, as well their family members and carers. The more people who respond and share their experiences, the more powerful our voice will be! All responses are anonymous and will be kept in secure storage only accessible to our research team.
Participants can register from any country in the world.
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How your voice makes a difference
Rare Barometer transforms your opinions and experiences about topics that directly affect you into facts and figures that can be shared with patient organisations, policy makers and the wider public, to drive real change for people living with a rare disease.
Our surveys:
Actively involve people living with a rare disease in research on the topics that matter most to them
Create a cross-border community of people living with a rare disease who act collectively to bring about change
Survey results
Survey process
Decisions on future topics to be explored through the programme are made by EURORDIS-Rare Diseases Europe. All Rare Barometer surveys are designed by the Rare Barometer team based on the inputs of an ad hoc Topic Expert Committee comprised of expert individuals from a range of backgrounds (patient representatives, academia, policy).
Click below to know more about our process and how patient organisations that are EURORDIS members can access their tailored results:
Privacy statement
This programme is owned independently by EURORDIS-Rare Diseases Europe and is a non-profit initiative; no commercial use of your details will be made at any time.
Privacy statementContact the Rare Barometer team
If you have any questions, or would like to discuss opportunities for collaborating or supporting the Rare Barometer programme, please contact:
Jessie Dubief,
Social Research Director & Rare Barometer lead
Jessie Dubief 2023