The Rare Barometer programme gathers real experiences from people living with rare diseases across Europe, helping to turn those experiences into concrete data that can influence EU and national policies. Each new edition builds on the findings of previous surveys, showing where progress has been made — and where challenges remain.

The survey is open until 16 November 2025 and is available in more than 25 languages.Everyone affected by a rare endocrine condition — patients, parents, or carers — is encouraged to participate and share it within their community.

👉 Take the survey here (insert the official link)

Together, we can make the voices of the rare endocrine community heard — and ensure they drive the change that matters most. Please share with those you know that would like to have their voice heard.