Millions of children with rare diseases set to benefit from faster diagnosis and better treatments

A new initiative promises faster diagnoses and improved treatments for children living with rare diseases across the UK.

The KidsRare platform will provide researchers with access to data from various hospitals on young patients with rare conditions.

It is being developed by Great Ormond Street Hospital (Gosh) and LifeArc, in collaboration with the Children’s Hospital Alliance (CHA).

Organising this information is hoped to lead to more breakthroughs in diagnosing and treating rare conditions, which are estimated to affect over three million people nationwide.

Dr Sam Barrell, chief executive of LifeArc, said: “Thousands of children are diagnosed every year with a rare disease, and the vast majority currently have little hope of a treatment, let alone a cure.

“Key to changing this stark reality is harnessing the comprehensive data we have in our amazing NHS hospitals to turbocharge research and position the UK as a global leader in rare disease research and care.

“We need to act today to transform the system for the millions of people living with a rare disease.”

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Source: The Independent, 12 February 2026