Rare childhood diseases: How should we respond?

Y.A. Zurynski, K. Frith, Helen Leonard, E.J. Elliott

Research output: Contribution to journalReview articleResearchpeer-review

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.
Original languageEnglish
Pages (from-to)1071-1074
JournalArchives of Disease in Childhood
Volume93
DOIs
Publication statusPublished - 2008

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