The charity Young Epilepsy, based in Lingfield, Surrey, is regarded as a world leader in epilepsy research and campaigns for the rights of children and young people with epilepsy.
It says epilepsy can be one of the most frightening and isolating conditions a child can experience.
Ms Carr said the charity was working to improve outcomes for young people with epilepsy by “improving the diagnosis of epilepsy, treatment of epilepsy and support for all aspects of childhood epilepsy”.
“I think much more support for young people with epilepsy is needed,” she said.
“And that’s whether that’s to do with their seizures or to do with all the other aspects of their life.
“I think we need to be looking much more holistically in terms of being able to support these young people.”
As part of her work as a Youth Voice Network member Ms Patel believes the charity offer a lifeline to youngsters with the condition.
“If that was nine-year-old me, I’d be so grateful because I can go online, I can find a youth network, I can look it up, I can find people who are like me.
“I think it’s absolutely amazing, but nine-year-old me had none of that.”