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.