Reason why number 2…
Understanding rights, laws, and how your child can get the support they deserve
Let’s talk honestly: if you’re a parent of a child with a rare disease, navigating the school system can feel overwhelming. That’s exactly why we need something called a Rare Disease Framework in schools. It’s about making sure every child gets what they need to succeed—and that schools know exactly how to help.
Here’s the thing: there are some really important laws and international agreements that back up your child’s rights. For example, the United Nations Convention on the Rights of the Child (UNCRC) is a big deal. Article 2 says no child should ever face discrimination. Article 28 is all about every child’s right to an education, no matter their health or background. And Article 24? That one guarantees your child’s right to the best health possible—even while at school.
So what does this mean for your family? It means that school leaders—principals, teachers, and everyone else—have a responsibility to make sure kids with rare diseases feel included and safe. We’re not just talking about following rules for the sake of it. It’s about schools making sure every child can be healthy, learn well, and feel part of the community.
Why is this so important? Well, kids with rare diseases might need different things from their school day. Maybe they have physical challenges, sometimes it’s about learning or emotional support, and often it’s a mix of all these. Teachers and staff need to be aware of these unique needs so they can make the right adjustments—because every kid deserves to shine.
There’s also the Children and Families Act 2014, which really puts families front and centre. Article 19 says young people and their families have to be involved in any big decisions—no more being left out of the loop! Article 25 is about services working together, so schools and health professionals actually talk to each other. Article 27 wants schools to keep checking in and updating what they’re doing, so your child’s support never falls behind.
And let’s not forget the Equality Act 2010. This law says schools must take action for children who are considered disabled—including many with rare diseases—even if there isn’t a formal Education, Health and Care Plan (EHCP) in place.
If you’re wondering why we need a special framework for rare diseases, here’s the short answer: most schools know what to do for common conditions like diabetes or cystic fibrosis, but when it comes to rare diseases, there just isn’t as much information out there. Each rare disease might only affect a handful of families, making it hard for schools to know the best way to help. That’s where a collective framework really helps—it brings together the knowledge and support everyone needs.
So, if you’re a parent feeling lost in the maze, remember: these laws and frameworks are there to protect your child’s right to an education, good health, and a future full of possibility. And by working together—parents, schools, health teams—we can make sure no child with a rare disease is left behind.Today we are going