Reverse Rett has formally established a Medical & Scientific Advisory Board (MSAB) to strengthen the clinical and scientific foundations of its work.
The MSAB brings together leading UK clinicians and scientists with recognised expertise across neurology, genetics, respiratory medicine, psychiatry, adult medicine and related disciplines. The Board serves as an independent advisory body to the Reverse Rett Board of Trustees and Executive Team and operates under formal Terms of Reference.
MSAB Members
We are grateful to the following experts for agreeing to serve:
Consultant Clinical Geneticist at Manchester University NHS Foundation Trust, specialising in rare genetic disorders and genomic diagnosis.
Professor of Neuroscience at the University of Edinburgh, researching the molecular and cellular mechanisms underlying Rett syndrome.
Neurologist specialising in movement disorders and complex neurological conditions, with previous clinical leadership at Alder Hey Children’s Hospital.
Consultant Occupational Physician and, Aviation Medicine Specialist. Parent advocate who brings lived experience as the father of a daughter with Rett syndrome.
Consultant Paediatric Neurologist at Evelina London Children’s Hospital, specialising in movement disorders and complex neurodevelopmental conditions.
Consultant in Paediatric Joing Head of Service for Paediatric Neurodisability and Community Child Health, Nottingham Children’s Hospital.
Founder of the Rett Syndrome Association UK (now Rett UK) and former President of Rett Syndrome Europe, with longstanding leadership in Rett advocacy and family support.
Consultant Child and Adolescent Psychiatrist and Professor of Developmental Neuropsychiatry at King’s College London, specialising in complex neurodevelopmental disorders including Rett syndrome.
Respiratory and pulmonary specialist based in Chicago, bringing expertise in airway and breathing complications relevant to Rett syndrome.
Consultant Paediatric Neurologist at the Royal Hospital for Children and Young People, Edinburgh, specialising in complex neurodisability.
Precision Medicine lead at the CIPPRD Rett Centre, working with Professor Santosh to provide expertise in precision medicine and translational research to advance care for individuals with Rett syndrome.
Why does this matter?
Because Rett syndrome is complex and severe. As treatments move closer to reality and policy discussions evolve, including wider European conversations about progressive neurological conditions, it’s essential that Rett is understood accurately and represented responsibly.
The MSAB will help ensure science, rigour and patient reality remain at the centre of our advocacy.
We’ll share more as this work develops.
Purpose
The MSAB exists to ensure that Reverse Rett remains:
Evidence-led
Clinically grounded
Strategically aligned as therapies and care pathways evolve
As the scientific landscape advances — including gene therapies, novel medicines and evolving NHS policy frameworks, expert oversight is essential to ensure accurate interpretation of emerging evidence and responsible advocacy.
Strategic Focus
At its inaugural meeting, the MSAB identified early priorities including:
Safeguarding information quality in a rapidly changing digital and AI environment
Supporting safe and effective use of AI by families and clinicians
Strengthening advocacy around healthcare access and routine screening
Supporting robust representation of clinical severity, life-course impact and unmet need within health technology and policy decision-making.
The Board will also implement a structured process for providing clinical advice between meetings.
Why This Matters
Rett syndrome is a complex and severe neurological disorder with lifelong impact. As European neurological policy discussions evolve, including those examining progressive paediatric conditions within broader “childhood dementia” frameworks, it is increasingly important that Rett is represented accurately in terms of its clinical features, severity and life-course burden.
The establishment of the MSAB ensures that clinical expertise remains central to Reverse Rett’s advocacy, public information and strategic direction.
Further updates will be shared as the Board’s work progresses.
