International conferences on rare diseases: initiatives in commitment, patient care and connections

Yvonne A Zurynski, Katie N Reeve and Elizabeth J Elliott
Med J Aust 2007; 187 (10): . || doi: 10.5694/j.1326-5377.2007.tb01433.x
Published online: 19 November 2007

To the Editor: The recent conference report by Knight and Taruscio highlights the need for a coordinated effort to fill knowledge gaps and improve service provision for Australians with rare diseases.1 Although, by definition, individual rare diseases occur infrequently, there are about 6000 rare diseases affecting 6%–10% of the population.2,3 This equates to 1.2 million Australians, 30 million people in Europe and 25 million in the United States. By comparison, diabetes affects 1.4 million Australians.4

  • Yvonne A Zurynski1
  • Katie N Reeve1
  • Elizabeth J Elliott1,2

  • 1 Australian Paediatric Surveillance Unit, The Children’s Hospital at Westmead, Sydney, NSW.
  • 2 Discipline of Paediatrics and Child Health, University of Sydney, Sydney, NSW.



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