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This study found evidence of a lack of co-ordinated care for people affected by rare diseases, which could have negative impacts on the physical and mental health of patients and families.

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Stephen Morris 1,*, Emma Hudson 1, Lara Bloom 2, Lyn S Chitty 3, Naomi J Fulop 4, Amy Hunter 5, Jennifer Jones 5, Joe Kai 6, Larissa Kerecuk 7, Maria Kokocinska 7, Kerry Leeson-Beevers 8, Pei Li Ng 4, Sharon Parkes 7, Angus IG Ramsay 4, Amy Simpson 5, Alastair Sutcliffe 9, Christine Taylor 4, Holly Walton 4

1 Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
2 The Ehlers–Danlos Society, London, UK
3 North Thames Genomic Laboratory Hub, Great Ormond Street NHS Foundation Trust and the University College London Great Ormond Street NHS Foundation Trust, London, UK
4 Department of Applied Health Research, University College London, London, UK
5 Genetic Alliance UK, London, UK
6 Centre for Academic Primary Care, University of Nottingham, Nottingham, UK
7 Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham, UK
8 Alström Syndrome UK, Torquay, UK
9 Great Ormond Street Hospital for Children NHS Foundation Trust, University College London, London, UK
* Corresponding author Email:

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