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Rare childhood diseases: how should we respond?
  1. Yvonne A Zurynski (yvonnez{at}chw.edu.au)
  1. Australian Paediatric Surveillance Unit, Australia
    1. Katie Frith (frith.katie{at}gmail.com)
    1. Australian Paediatric Surveillance Unit, Australia
      1. Helen Leonard (hleonard{at}ichr.uwa.edu.au)
      1. Telethon Institute for Child Health Research, Australia
        1. Elizabeth J Elliott (elizabe2{at}chw.edu.au)
        1. University of Sydney and Children's Hospital at Westmead, Australia

          Abstract

          Paradoxically, rare diseases are common, collectively affecting 6 to 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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          • Erratum adc.2007.134940

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