Rare childhood diseases: how should we respond?

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

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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Child
  • Child Health Services / statistics & numerical data
  • Child, Preschool
  • Delivery of Health Care / economics
  • Delivery of Health Care / organization & administration*
  • Female
  • Fetal Alcohol Spectrum Disorders* / diagnosis
  • Fetal Alcohol Spectrum Disorders* / economics
  • Fetal Alcohol Spectrum Disorders* / epidemiology
  • Fetal Alcohol Spectrum Disorders* / psychology
  • Humans
  • Infant
  • Male
  • Parents / psychology
  • Patient Care Team / standards
  • Patient Satisfaction
  • Pregnancy
  • Rare Diseases* / diagnosis
  • Rare Diseases* / economics
  • Rare Diseases* / epidemiology
  • Rare Diseases* / psychology
  • Rett Syndrome* / diagnosis
  • Rett Syndrome* / economics
  • Rett Syndrome* / epidemiology
  • Rett Syndrome* / psychology