February 2012

Rare Disease Workshop

To mark International Rare Diseases Day 2012, the APSU will be hosting a Rare Disease Workshop on Wednesday 7th March from 9am - 5.30pm to:

  • Raise awareness of the impacts of rare diseases
  • Provide information about resources for clinicians and families
  • Provide an update of recent developments on rare disease policy


This Educational Workshop will be held at the Kerry Packer Building, Kids Research Institute, The Children's Hospital at Westmead and will be provided free of charge to families.

The Workshop will be divided into three key sessions:

Session 1: Research policy and clinical guidelines for rare conditions
Session 2: Experiences of patients and families
Session 3: Health Services: Multidisciplinary clinics and coordinated care

For information about the Workshop and to view the full program please see the links below.


Media Releases

All links below are to PDF files: