EPU, as a member of Eurordis, the European alliance for rare diseases, is associated to the survey they have launched on September 11th 2025, about living conditions with such diseases. This is a unique opportunity for Polio survivors to build a shared vision of our lives with polio sequelae and/or post-polio syndrome across Europe. The data collected can be a powerful tool to ensure our voices are heard. The more responses we shall send on polio the better.

The survey is available in 25 languages here: tiny.cc/RB-MH It includes questions on how people cope with daily stress, what support they rely on, and how they manage to learn, work, and contribute to their communities while living with a rare or undiagnosed condition — and, more specifically for us, with polio sequelae. More information about the survey, including the questionnaire, presentation, and a recording of the launch webinar, is available here: tiny.cc/RB-MH-info The survey is open to all people living with a rare disease or undiagnosed condition, as well as their close family members, from numerous countries. It takes no more than 25 minutes to complete and will remain open until November 16, 2025.