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Rare childhood diseases: how should we respond?
  1. Y Zurynski1,
  2. K Frith1,
  3. H Leonard2,
  4. E Elliott1,3
  1. 1
    Australian Paediatric Surveillance Unit and Discipline of Paediatrics and Child Health, University of Sydney, Sydney, NSW, Australia
  2. 2
    Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Perth, WA, Australia
  3. 3
    The Children’s Hospital at Westmead, Westmead, NSW, Australia
  1. Dr Yvonne Zurynski, Australian Paediatric Surveillance Unit, Level 2 Research Building, The Children’s Hospital at Westmead, Locked Bag 4001, Westmead, NSW 2145, Australia; yvonnez{at}chw.edu.au

Abstract

Paradoxically, rare diseases are common, collectively affecting 6–10% of the population and have a huge impact on patients and families, health services, clinicians and the wider community. Accurate data are required to inform clinical practice, government policy and health service planning. We recommend a national approach, similar to that adopted in the USA and Europe, to support research and promote advocacy and equitable access to services for children with rare diseases.

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Footnotes

  • Funding: The activities of the APSU are supported by the Australian Government Department of Health and Ageing, NHMRC Enabling grant no. 402784, NHMRC Practitioner Fellowship no. 457084 (E Elliott), the University of Sydney Faculty of Medicine and the Royal Australasian College of Physicians.

  • Competing interests: None.

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