History of Reye’s syndrome
If you look on the information leaflet within a packet of aspirin today, you will see the statement “do not give to children aged under 16 years, unless on the advice of a doctor". Behind this warning lies the story of Reye’s syndrome, and the important work of the National Reye’s Syndrome Foundation of the United Kingdom.
Reye’s syndrome was first named in Australia in 1963, as an often-fatal illness affecting the liver and brain which can appear in children after a viral infection such as flu or chickenpox. The exact cause of Reye’s syndrome remains unknown; however, research in the US in the 1970s and 1980s reported a strong correlation between aspirin intake during viral illnesses and occurrence of Reye’s syndrome.
Establishment of the National Reye’s Syndrome Foundation (NRSF)
Despite cases of Reye’s syndrome peaking in the early 1980s, there was little information available to medical professionals or families encountering the illness in the UK. This was until the founding of the National Reye’s Syndrome Foundation of the United Kingdom (NRSF) in 1983 by parents Audrey and Clifford Harrington. The NRSF aimed to fund research into Reye’s syndrome and raise public awareness of the condition. This included research and campaigning which led to the introduction of aspirin warning labelling in the UK in 1986, resulting in a dramatic decline of Reye’s Syndrome cases.
Ties with RCPCH
The NRSF maintained strong ties with the Royal College of Paediatrics and Child Health (RCPCH), particularly through the efforts of Gordon Denney who took over the administration of the Foundation in the mid-1980s. Gordon, and his wife Gillian lost their own son Jonathan to Reye’s syndrome and worked tirelessly to raise public awareness of the condition. In 2012, the RCPCH assumed responsibility for the Foundation’s work and acknowledged the historical significance of the NRSF’s records, which not only document the organisation’s legacy, but also the history of Reye’s syndrome in the UK.
Cataloguing the NRSF Collection
Gordon Denney not only donated the records of the NRSF to the College but also provided generous financial support to fund the work of a Project Archivist to catalogue the records making them accessible to researchers. Between April and November 2025, the NRSF collection was catalogued, repackaged and prepared for long-term preservation ensuring its accessibility for future researchers.
The collection offers a rich and varied insight into the NRSF’s work. It includes documents detailing its founding, the personal papers of Dr Susan Hall, who chaired the NRSF’s Medical and Scientific Advisory Board, and a wide array of public-facing materials such as posters, leaflets, and campaign literature. The collection also includes personal accounts and experiences of Reye’s syndrome from families and clinicians encountering the effects of the illness, as well as recollections of the personal connections to Reye’s syndrome of those involved in the Foundation.
The NRSF’s legacy and the future of Reye’s Syndrome
The story told by the NRSF collection demonstrates how determined individuals can drive change that lasts for generations. Whilst there have been no known cases of classic Reye’s syndrome since 2002 in the UK, the work of the NRSF continues to have an impact on child health. Namely, research and campaigns funded by the NRSF were instrumental in the introduction of warning labelling on aspirin products, which made visible the link between aspirin and Reye’s Syndrome in children. These warnings are still used on aspirin products today.
Another lasting contribution of the NRSF was the development of the clinical guideline for managing decreased consciousness in children. This guideline continues to be updated and remains in use in hospitals today. Whilst Reye’s syndrome in its classic form seems unlikely to reappear, new waves of viral illnesses such as seasonal flu are a reminder that vigilance in child health is always necessary.
Our history and archive
The NRSF catalogue is available to view through our online Archive Catalogue, where you can also access records we hold about our past as the British Paediatric Association (BPA) and a Royal College, and of the history of child health. We also have subject archive guides on Reye’s syndrome and on other topics. If you would like to access the archives, or you would like more information about our history and archives, please contact us on information.governance@rcpch.ac.uk.