EURORDIS Rare Barometer Programme

At the heart of the EURORDIS Rare Barometer Programme is the idea that the advocacy work of EURORDIS and its members should continue to be increasingly based on patient perspectives.

At EURORDIS, requests for patient perspectives in health, research and social policy-making are on the rise as the benefits associated with evidence-based programmes or policies are being increasingly recognised and required by all stakeholders. To best respond to our growing advocacy role and achieve a high quality evidence-base from people living with a rare disease, the EURORDIS Rare Barometer Programme will rely heavily on patient engagement to inform sound policy from the patient perspective by carrying out surveys, focus groups, individual face-to-face interviews and other opinion-gathering methods to gain firsthand feedback from patients. 


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: what and why?

Learn about the unique qualities of the Rare Barometer Programme and why it is important for people living with a rare disease


Register to Rare Barometer Voices

Make your voice heard by registering to join Rare Barometer Voices and take part in our surveys


Contribute to the Rare Barometer Programme

How companies or research centres can support the Rare Barometer Programme through in-kind support or donations


Take a look at past surveys

Read the results of surveys conducted by EURORDIS in previous years

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