Exciting news from the IRDiRC PACC member EURORDIS! The Rare Barometer survey on the impact of rare diseases on daily life is now open. Open worldwide and available in 25 languages, from 10 July to 8 September.
More information about the survey:
- Where can I find the survey and in how many languages is it available?
The survey is available in 25 languages at: tiny.cc/RB_DailyLife. Please feel free to share this link amongst your networks and encourage your community to take the survey!
- Who can participate and until when?
The survey is open to participation to all people living with a rare disease and their close family members until 8th September 2024.
- How can patient organisations spread the word on the survey (e.g. to ensure they have at least 30 respondents so that they can access tailored results)?
An actionable comms toolkit is available to help patient organisations disseminate the survey among their network and patient community. You can download it at: eurordis.org/voices.
- What final results are made available and to whom?
- Everyone will have access to the overall European results (openly made available on our website), which will be published by the end of the year. No peer-reviewed publication is planned for this survey.
- EURORDIS member organisations and ERNs who have over 30 respondents for their community can access tailored results, including a dashboard containing charts and tables for each survey question, and a factsheet summarising key results.
- National Alliances: Can access rare results for all the respondents of a single country
- European Federations: Can access the European results for a disease or disease group
- ERNs: Can access collective results for the diseases they cover, are actively working on or find relevant to their scope and objectives.
- Other EURORDIS members: can access results for their community, upon request to rare.barometer@eurordis.org
- Where can I find more information about the survey topic?
The survey background and objectives page is available at: tiny.cc/RB_DailyLife_Info. Also, for those interested in exploring the full questionnaire (topics covered, structured), you can find it at: tiny.cc/DailyLife_questionnaire