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This study revealed experiences of poor care among young people with sickle cell disorder outside specialist services, with young people's voices being often ignored.

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Alicia Renedo 1, Sam Miles 1, Subarna Chakravorty 2, Andrea Leigh 3, John O Warner 4,5, Cicely Marston 1,*

1 Department of Public Health, Environments and Society, Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, London, UK
2 Department of Paediatric Haematology, King’s College Hospital, London, UK
3 University College London NHS Hospitals Foundation Trust, London, UK
4 National Heart and Lung Institute, Imperial College London, London, UK
5 Collaboration for Leadership in Applied Health Research and Care for Northwest London, Imperial College London, London, UK
* Corresponding author Email: Cicely.Marston@lshtm.ac.uk

Declared competing interests of authors: Subarna Chakravorty reports receiving honoraria for taking part in advisory boards for Novartis Pharmaceuticals UK Ltd (London, UK) and an honorarium from Novartis Pharmaceuticals UK Ltd for participating in the development of a national consensus guideline document for the management of health-care transition services in sickle cell disorder. John O Warner reports acting as a principal investigator and a scientific advisory board member (2005 to present) for trials of infant milk formulae for the prevention of allergy (Danone SA, Paris, France/Nutricia, Zoetermeer, the Netherlands); acting as an investigator and a scientific advisory board member (2008 to present) for trials of an environmental control system for allergic conditions (Airsonett AB, Ängelholm, Sweden); bursaries for lectures at conferences for Danone SA/Nutricia, Airsonett AB, UCB Pharma (Brussels, Belgium), Novartis Pharmaceuticals UK Ltd and Allergy Therapeutics plc (Worthing, UK); acting as medical advisor (1993 to present) for the Anaphylaxis Campaign (www.anaphylaxis.org.uk); membership of the scientific advisory board (2017 to present) for a UK government Home Office enquiry into potential toxic health hazards from the Grenfell Tower fire; and acting as academic theme lead (2014–19) for the Collaboration for Leadership in Applied Health Research and Care for Northwest London (until 30 September 2019).

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