Rare4Schools is proud to launch the Rare Schools Survey, a groundbreaking three‑year initiative designed to transform how schools support children living with rare diseases.

Why this matters

Round 1 is open now and focuses on mapping the current landscape, identifying challenges, gaps and opportunities. By listening closely to families, children, siblings, and educators, we’ll build the foundation for deeper insights in the years ahead and deliver practical solutions to the biggest problems.

Who we need to hear from

• Parents & Carers: Share your experiences alongside your child and their siblings so we can understand the full picture of family life with a rare disease.

• Teachers & School Staff: Tell us what you know, whether it’s a little or a lot, about rare diseases in education. Your perspective will help us uncover what support is most needed in classrooms.

Our mission

This survey is about giving every stakeholder a voice. Together, we can empower children living with a rare disease to thrive in education and ensure schools are equipped with the compassion, knowledge and resources they deserve.

📅 Round 1 closes on 31 January 2026 – don’t miss the chance to make your voice heard. Complete the survey today and be part of the change..