Millions of children with rare diseases set to benefit from faster diagnosis and better treatments
New platform to transform care for millions of children with rare diseases
- A new platform called KidsRare is being developed to accelerate diagnoses and improve treatments for children in the UK living with rare diseases.
- Great Ormond Street Hospital (Gosh) and LifeArc are leading the initiative, in collaboration with the Children’s Hospital Alliance (CHA).
- KidsRare will provide researchers with access to data from various hospitals on young patients with rare conditions.
- The initiative aims to harness existing NHS data to drive research breakthroughs and establish the UK as a global leader in rare disease research and care.
- Families, such as Francesca Granata-Tyler's, whose daughter received a diagnosis thanks to data access, welcome the platform, hoping it will provide earlier diagnoses and potential new treatments for more children.
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