RESEARCH
We fund and champion UK-led research into NORSE and FIRES, working alongside leading clinicians, researchers and organisations to improve understanding and strengthen UK knowledge and capacity in these rare conditions.
Our Goal
Our goal is to deepen understanding, improve treatments, and outcomes, and help build the UK's knowledge and research capacity for NORSE and FIRES.
Current Project
Learn more about our latest £110,000 NORSE & FIRES research collaboration below.
£110,000 NORSE & FIRES RESEARCH PROJECT
In partnership with the Epilepsy Research Institute, we are co-funding a pioneering £110,000 UK research project into NORSE and FIRES.
The study aims to improve understanding of long-term outcomes and identify factors that may help predict recovery and disease course.
This is only the second dedicated UK research project focused specifically on NORSE and FIRES in the UK.
Led by researchers Dr Marios Kaliakatsos and Professor Torsten Baldeweg at University College London (UCL) Great Ormond Street Institute of Child Health, this project represents a significant step forward for UK NORSE and FIRES research.
Explore more about this research below.
Research Questions
The research aims to answer some of the most important questions facing families affected by NORSE & FIRES.
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Why do some people recover better than others?
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Can we identify early signs that help predict recovery and long-term outcomes?
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How can this knowledge help clinicians make earlier, more personalised treatment decisions?
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Ultimately, how can we improve care, support and quality of life for survivors and their families?
Research Team
Our research is led by internationally recognised clinicians and researchers from Great Ormond Street Hospital and University College London.
Dr Marios Kaliakatsos
Consultant Paediatric Neurologist, Great Ormond Street Hospital and Associate Professor, UCL Great Ormond Street Institute of Child Health.
Professor Torsten Baldeweg
Professor of Developmental Cognitive Neuroscience the UCL Great Ormond Street Institute of Child Health.
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A PhD Researcher to lead this project is currently being recruited.
Watch our Short Film
Watch the short video below to hear directly from Dr Marios Kaliakatsos, Professor Torsten Baldeweg, and Sam's mum about this pioneering research project and what it could mean for families affected by NORSE and FIRES.
Help Continue Sam's Legacy
Every donation helps us fund research, awareness and support families affected by NORSE and FIRES.
Together, we are helping to improve outcomes for people affected by NORSE and FIRES and create a better future for patients and families.
Your support makes this possible.