How Jonah’s parents are connecting families with his rare disease -and how you can too

As an online manager of international patient communities for many different rare diseases, I receive emails every day from parents and affected people looking for help and information about their …

Protecting education for children with medical conditions and life-saving heart equipment for schools

Much of the unhappiness with the draft Children & Families Bill, now Act, stemmed from its exclusion of children with disabilities or medical conditions who did not have a specific …