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Rare Barometer is a EURORDIS global survey initiative, available is 23 languages, that aims to make the voice of rare disease patients stronger.

Take our survey
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voices have joined the programme


Register to Rare Barometer


Receive invitations to surveys


Take part in the survey


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

Inform policy and decision makers on what it really means to live with a rare disease

Actively involve patients in research on the topics that matter most to you

Create a cross-border community of people affected by a rare disease who act collectively to bring about change


I have always been an activist, in particular in fighting against my disease. I remember my first time at a Eurordia meeting some years age where I really understood how important scientific research is.


This programme is owned independently by EURORDIS and is a non-profit initiative; no commercial use of your details will be made at any time. The programme is guided by a EURORDIS Steering Committee and is supported by the Rare Barometer Programme Advisory Committee.



Rare Barometer benefits from the input of its Advisory Committee. This is a consultative committee comprised of expert individuals from a range of backgrounds (academia, corporate, policy). Final decisions on future topics to be explored through the programme are made by EURORDIS.

For each survey, an ad-hoc topic expert committee comprised of individuals with relevant expertise in the topic is created.

Are you interested in collaborating with us? Do you want to suggest a survey topic? Contact us at


Contact 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:

Sandra Courbier,
Rare Barometer leader

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