Rare childhood diseases

how should we respond?

Yvonne Zurynski*, K. Frith, H. Leonard, E. Elliott

*Corresponding author for this work

Research output: Contribution to journalReview article

63 Citations (Scopus)

Abstract

Paradoxically, rare diseases are common, collectively affecting 6-10% of the population and have a hoge 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
Number of pages4
JournalArchives of Disease in Childhood
Volume93
Issue number12
DOIs
Publication statusPublished - 1 Dec 2008
Externally publishedYes

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