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Arch Dis Child. 2008 Dec;93(12):1071-4. doi: 10.1136/adc.2007.134940. Epub 2008 Aug 6.

Rare childhood diseases: how should we respond?

Author information

  • 1Australian Paediatric Surveillance Unit and Discipline of Paediatrics and Child Health, University of Sydney, Sydney, NSW, Australia. yvonnez@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.

PMID:
18684747
[PubMed - indexed for MEDLINE]
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