Eurordis - Rare Disease Europe

Webinar: Rare Barometer survey on what helps people live with a rare or undiagnosed condition

During this EURORDIS webinar, we will launch the new Rare Barometer survey focused on identifying the key factors that support quality of life for individuals and families impacted by rare diseases.

💬 Webinar: What helps people live with Rare or Undiagnosed condition
➡️ Register Now!
🗓️ Survey Dates: 11 September – 16 November
🗣️ Available in: 25 languages, accessible worldwide
⏰ 14:30 CET

The survey will explore essential topics, including:

• Coping with daily stress and emotional wellbeing
• Access to support systems and social networks
• Ability to study, work, and contribute to society

In the webinar, the Rare Barometer team will guide you through the survey and show you how to promote it using a communications toolkit, to be made available in 25 languages after the event.

By participating, you’ll help EURORDIS gather powerful data to advocate for stronger psychosocial support for the rare disease community.

Results will be shared in 2026 with participants, policymakers, and the general public.

EURORDIS Members and European Reference Networks who gather more than 30 responses to the survey will be able to receive access to tailored results.

Your involvement matters. Help make a difference in the lives of people living with rare and undiagnosed conditions.