EURORDIS has created a new survey that aims to gather data on mental health and quality of life from people with rare conditions like OI. It includes questions on how people cope with daily stress, which support they can rely on, or how they manage to study, work, and contribute to their community while living with a rare condition.

The survey is open to all people living with a rare conditions and their close family members from any country in the world. It should take no more than 25 minutes to complete and closes on November 16, 2025.

Why is it important for the OI community? If we gather enough replies from people with OI, OIFE will have access to tailored results and aggregated data for OI specifically. Information that can be useful to understand the needs of people with OI and provide further support in the management of mental health.
Take the survey and make your voice heard here