Living with a child who has a rare condition means navigating an education system that often feels like it was never designed for your family's reality. Yet, buried within the legal framework is Section 19 of the Education Act 1996. A provision that, when understood, can be a lifeline for parents and carers.

This blog demystifies Section 19, explaining not only what it demands of Local Authorities, but also how it can empower you to advocate for your child's right to a suitable education, whatever their individual needs. We’ll explore the legal obligations, the practical implications and the common pitfalls families face, so you can approach your child’s education journey with clarity and confidence.

Teachers are often the first professionals to notice when something doesn’t quite add up.

At Rare4Schools, we see how greater awareness of rare diseases can prevent children being misdiagnosed or overlooked under an autism label — and help families reach answers faster.

Our latest blog explores why rare disease awareness in schools matters, how diagnostic overshadowing happens, and the powerful role teachers play in early identification.

Read why awareness can change lives.

Half face bullying. Most feel isolated. Together, we can change the story for children with rare conditions.

Starting school for families with a child with a rare disease can be a challenge. A supportive school makes the world of difference!

For most families, the back-to-school season is a whirlwind of stationery lists, uniform fittings, and hopeful anticipation. But for families of children with rare diseases, it’s often a time of deep anxiety and emotional strain. The return to school can feel like handing over your child to a system that may not understand their condition, their needs—or their potential.

At Rare4Schools, the message is clear: “A rare disease should never be a barrier to learning.” This blog explores the worries families face and how the Rare Disease Framework can help schools and families work together to create safer, more inclusive learning environments.

Understanding rights, laws, and how your child can get the support they deserve

Every child deserves the chance to thrive at school—but for families navigating rare diseases, ensuring that opportunity can feel like an uphill battle. Too often, schools are equipped for more common conditions, leaving children with rare diagnoses and their families searching for answers. This blog explores why a Rare Disease Framework is essential in education, what laws and rights support your child, and how parents, teachers, and health professionals can work together. Our goal? To empower you with knowledge, advocate for change, and help schools create truly inclusive environments where every child can succeed, no matter how rare their diagnosis.

Explore how compassionate communication can make a profound difference for individuals and families affected by rare diseases. This blog highlights why empathy, attentive listening, and openness are vital—not only for building trust and inclusion generally, but especially in the context of rare conditions where understanding and connection are often hard to find. Discover practical ways to reduce conflict, foster emotional security, and create supportive communities, even amid uncertainty and challenge. Read more to learn how a single act of communication can bring hope, healing, and a sense of belonging to those on the rare disease journey.

 The Silent Struggle of Extended Family
When a child has a rare condition, the emotional weight doesn’t stop with the parents. As a grandmother to a child with Congenital Hyperinsulinism, I’ve experienced the quiet, constant layer of worry that comes with supporting both generations.

 Sleepless nights.
 Double-layered worry.
 Hope for a better system.

Read about “The Overlooked Impact: A Grandmother’s Perspective on Rare Disease” and why a national schools framework would mean more than just policy—it would mean peace of mind.

Why do we need the Rare Disease Framework?

Let us tell you by looking at research into teaching students with rare diseases in the UK.