Current EURORDIS Rare Barometer surveys

Join the 15,000 people living with a rare disease, family members and carers that share their views on the topics that matter the most to them both by responding to our surveys!

Rare Barometer, the EURORDIS survey programme, aims to make the voice of rare disease patients stronger. The objective is to transform your opinions and experiences about topics that directly affect you into figures and facts that can be shared with a wider public and policy makers.

Current surveys

Rare Barometer survey on the Journey to Diagnosis for People Living with a Rare Disease!

Link to survey:

We have created a communication toolkit, available in 26 languages, to help you promote the survey via email and your social media channels!

Questions about our surveys? Please contact


Page created: 04/12/2019
Page last updated: 08/04/2022
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases