Rare childhood diseases: How should we respond? 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
    Number of pages4
    JournalArchives of Disease in Childhood
    Volume93
    Issue number12
    DOIs
    Publication statusPublished - 2008

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