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Rare Barometer Global Survey

A new global Rare Barometer survey on the diagnostic journey of people living with a rare disease has been published and we invite you to participate and share it with your community via this link.

Completing the survey will not take you more than 20 minutes, which ends on June 15, 2022.

This survey will make it possible to present data and figures to political leaders.

The overall results will be shared with all survey respondents and communicated to patient organisations, policy makers and the general public with the aim of driving tangible change for the rare disease community.


  • All responses are anonymous and will be stored in a secure location only accessible to the Rare Barometer research team.
  • All the information you provide us is completely confidential and complies with the General Data Protection Regulation (RGPD).