Skip to content
Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt

Rare Barometer survey launched on rare diseases and social participation 

Julho 2024

Rare Barometer, the survey initiative of EURORDIS-Rare Diseases Europe, has today launched a new global survey on the impact of rare diseases on everyday life. 

The survey is open to individuals living with a rare disease and their family members worldwide, and is available in 25 languages. 

Previous Rare Barometer studies have highlighted significant difficulties and gaps in accessing care and support. Individuals with rare diseases face persistent barriers in various aspects of their lives, including work, education or, social support. These challenges often lead to unequal treatment and a lack of recognition for their conditions and disabilities. 

The new Rare Barometer survey on the impact of living with a rare disease on everyday life investigates the societal obstacles encountered by people living with a rare disease, from a human rights perspective.  

Launching the survey, Jessie Dubief, EURORDIS Social Research Director and Rare Barometer Programme Lead, commented: 

Our new survey aims to delve into the day-to-day dimensions of a life with a rare condition, such as participation in school and employment, the types of disabilities experienced by people with a rare disease, and their access to social rights.

By collecting insights from the rare disease community, we hope to have a clearer view of the barriers they face. The experiences and perspectives shared by respondents will be crucial to inform our advocacy efforts to make sure that people with a rare disease can live their lives to their full potential.

Also commenting on the survey launch, Raquel Castro, EURORDIS Social Policy and Initiatives Director, said:  

It is crucial to recognise that societal barriers significantly impact our community. Instead of solely focusing on fixing medical conditions, we must also acknowledge and address the broader societal factors that create barriers and challenges for people living with rare diseases and their families. Only then can we effectively advocate for the changes needed to ensure everyone with a rare disease can live to their fullest potential.

This survey will generate new knowledge about the social participation and independent living of people with rare diseases worldwide. Developed with a committee of experts, including patient representatives, it will contribute to policy recommendations to enhance social participation and improve access to social rights for all people with rare diseases. 

European results will be published on the EURORDIS and Rare Barometer websites, and shared with respondents, with the public and with decision makers to bring about change for the rare disease community. Patient organisations that are members of EURORDIS, as well as European Reference Networks, can have access to individualised results for their community by writing to

Take the survey

You can take the survey in 25 languages by clicking this link:  

It takes no more than 20 minutes to complete and closes on 8 September 2024

Spread the word

Use our communication toolkit, available in 25 languages, to encourage your network to participate in the survey.

More information

Access the PDF version of the questionnaire in English.

Contact the Rare Barometer team at 

Watch our webinar recording

To access the webinar powerpoint slides, click here.

About Rare Barometer

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 one to three studies each year and 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. The objective is to transform the opinions and experiences of people living with a rare disease and their close family members into facts and figures that can be shared with a wider public and with decision-makers.