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Rare Barometer to launch a new survey on the impact of rare diseases on daily life

Июнь 2024

On Wednesday 10 July, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life.

The survey will be open to all people living with any rare disease and their family members worldwide and will be available in 25 languages, from 10 July to 8 September

People living with a rare disease need follow-up care and support from different health professionals, often from several different medical specialists, as well as from social workers and other social and local service providers. These may also include rehabilitation, daycare, home care, personal assistants, respite services, adapted schools and workplaces, psychological support, and social prescribing. 

The results of the upcoming survey will be used by EURORDIS and its members to measure the social vulnerability of people living with a rare disease and design advocacy and actions to reduce it. 

By gathering insights from the rare disease community, this survey aims to: 

  • Assess the level of social participation and identify factors that facilitate or hinder involvement in various social activities, such as education, leisure, and employment. 
  • Understand preferences and needs related to independent living. 
  • Collect experiences with disability assessments. 
  • Identify the main barriers and facilitators to accessing social and disability rights.

The questionnaire was designed with the help of a topic expert committee composed of relevant experts in social participation, independent living and disability, including policy experts and patient advocacy organisations. 

Take the survey

Members of the Rare Barometer panel will receive an email inviting them to participate in the survey a few days before its official launch. Join the Rare Barometer panel to be among the first to complete the survey and receive the final results!  

If you do not wish to be part of the Rare Barometer panel, follow our latest updates: you will be informed of the survey launch in the EURORDIS newsletter and social media. You can also follow our dedicated webpage to be informed of the official launch. 

Join our upcoming webinar

Register here to join us on Wednesday, 10 July at 2:30 PM CEST, for the launch of the latest survey focusing on the impact of rare diseases on social participation.

Learn about the objectives and structure of the new survey, understand how your participation can influence policy and advocacy efforts and discover how the survey results will be utilised to measure and reduce social vulnerability within the rare disease community.

Spread the word!

    Use the communication toolkit we will make available in 25 languages to encourage your network to take the survey! 

    The Rare Barometer guide provides more information on how to participate in our surveys and use their results for action. 

    For more information, please contact the Rare Barometer team at rare.barometer@eurordis.org 


    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 


    Jessica Bailloux, Communications Junior Manager