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Eurordis - Rare Disease Europe


Survey design for rare disease patient organisations

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Follow our specialised e-learning course on survey design, tailored to empower patient organisations in their mission. Gain the knowledge and skills needed to create impactful surveys, collect vital insights, and drive positive change within the rare disease community. Enroll today to make a difference!

This course is for you:

  • If you are a patient representative who wants to understand how to best capture and act on the insights of your rare disease patient community, to ensure that their voice and lived experience are at the heart of what your patient organisation does, this course is definitely for you!
  • If you are interested in further developing your survey design skills, especially in the context of patient/people-centered methods, this course is also for you.

It can take you from 3 hours up to 5 hours to complete the course depending on whether you watch the videos, read the additional resources or download the support materials.



This online course is based on the EURORDIS Guide ‘A brief guide for rare disease patient organisation on how to listen to the community’ and has been made possible thanks to the generous support of Boston Scientific Foundation Europe.


We would love to hear your feedback once you’ve completed the course. Go back to this page and submit your feedback using the ‘Feedback’ button that you’ll find below the progress bar. Your opinion is very valuable and will help us improve how we deliver our courses.