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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.

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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 them

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

Rare Barometer : Diagnosis odyssey of people living with a rare disease survey communications toolkit

Discover our comprehensive Communications Toolkit to share the results of our survey on the diagnosis odyssey of individuals living with a rare disease. Available in 27 languages, this toolkit equips you with social media images, logos, suggested social media text, and email templates to effectively announce and promote the survey findings. Empower your network to raise awareness and advocate for change.

Access the toolkit here >>>

Survey results


I was exhausted and overwhelmed in my role as a patient with autoimmune polyendocrine syndrome-type 1, caregiver and advocate. The report of the Rare Barometer survey on the daily impact of rare diseases provided me with validation and a new frame of reference.


I was involved in the diagnosis questionnaire since the beginning, which gave me the opportunity to contribute to the questions, and adapting them to the national context. This is important, because it will make people from my country feel more involved.


We participated in the Rare Barometer survey on diagnosis and got great numbers that allowed us to analyse HHT replies from France, Germany, and Italy, and base our future actions on the needs that emerged from the survey. It was a roadmap that we didn’t have before.


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.


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:

Jessie Dubief,
Rare Barometer Programme Senior Manager

Jessie Dubief 2023