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June 24 2024

New Survey on the Impact of Rare Diseases: Launching July 10th, 2024

Rare Barometer Survey Webinar

On July 10th at 2:30 PM CEST, Rare Barometer, the international survey initiative by EURORDIS – Rare Diseases Europe, will unveil a new survey focused on the impact of rare diseases on everyday life. This comprehensive survey aims to capture the unique challenges and experiences of individuals living with rare diseases and their families across the globe.

Survey Details:

  • Availability: July 10th to September 8th
  • Languages: Accessible in 25 languages
  • Participants: Open to all individuals with rare diseases and their family members worldwide

Why Your Participation Matters

Your input is crucial. By participating in this survey, you contribute valuable insights that can shape future policy decisions and advocacy efforts. This is an opportunity to have your voice heard and to make a tangible difference in the rare disease community.

Join the webinar on July 10th

EURORDIS invites you to join us for a special webinar on the day of the survey launch. During this session, we will:

  • Discuss the objectives and scope of the new survey
  • Explain how your participation can influence policy and advocacy
  • Provide a communication toolkit to help you spread the word within your networks

How to Register:

Don’t miss this chance to be part of a global effort to understand and improve the lives of those affected by rare diseases. Your experiences and insights are invaluable to us and to the broader rare disease community.


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