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Australian Paediatric Surveillance Unit The Australian Paediatric Surveillance Unit at the Kids Research Institute
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Clinicians Resource Pack - Rare Diseases Resource Pack

1) Workshop Program

 

2) Papers

  • Rare childhood diseases: how should we respond?
  • Call for a national plan for rare diseases
  • The common problem of rare diseases in general practice

 3) Presentation summaries

  • Rare respiratory diseases in children - impact on health professionals and health services
  • Into the unknown - living with chILD - our journey with Sarah
  • Zebras on the common? Rare diseases in general practice
  • Helping families affected by rare diseases
  • Benefits of multidisciplinary clinics for rare diseases
  • The Association of Genetic Support of Australasia, Inc
  • SNUG camps for children affected by rare diseases: A dose of respite

Useful links

  • Special Needs Unlimited Group - general information
  • Special Needs Unlimited Group - referral form
  • Bladder Exstrophy Epispadias Cloacal Exstrophy Hypospadias Australian Community (BEECHAC)
  • Steve Waugh Foundation Australia
  • SMILE Foundation  (2014 note: Variety Australia has adopted The Smile Foundation as part of their programs)
  • The Association of Genetics Support of Australasia. Inc
  • EURORDIS
  • NORD
  • Orphanet
APSU
  • APSU News
  • Fetal Alcohol Spectrum Disorder Australian Registry
  • APSU Study Updates
  • Female Genital Mutilation in Australia is Everyone's Business
  • Parents Portal
  • Resources
  • APSU Contributors
ABOUT THE APSU
  • Current Staff
  • Scientific Review Panel (SRP)
  • Funding & Supporters
  • Collaborators
STUDIES
  • Current Studies
  • Past Studies
  • Apply for new study
PUBLICATIONS
  • Publications
RARE DISEASES
  • Rare Disease Workshop 2010
  • Rare Disease Day
  • Clinicians Resource Pack - Rare Diseases
  • Rett Syndrome Workshop 2005
  • Useful Links
OTHER SURVEILLANCE SYSTEMS
  • AMOSS
  • PAEDS
  • International Network Of Paediatric Surveillance Units (INOPSU)
Contact us
© 2023 The Australian Paediatric Surveillance Unit.   |   Contact us: E  SCHN-APSU@health.nsw.gov.au T 02 9845 3005
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