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Rare Diseases Workshop 2010
Responding to the common problem of rare diseases
Saturday February 27, 2010
Kids Research Institute, The Children's Hospital at Westmead
Presentations
1. Impacts on clinicians and patients
Dr Yvonne Zurynski Rare diseases in Australia: an overview of research and other initiatives
Professor Adam Jaffe Impacts on health professionals and health services
The Walker Family Living with ChiLD: Children's Interstitial Lung Diseases
Dr Andrew Knight Zebras on the common? Rare diseases in general practice
Lisa Smith Helping families affected by rare diseases
general discussion
2. resources for health professionals and patients
Professor David Sillence Benefits of multidisciplinary clinics for rare diseases
Mrs Dianne Petrie Providing support and education for people affected by rare diseases
Graeme Stuart SNUG camps for children affected by rare diseases: a dose of respite
Professor Elizabeth Elliott National plan for rare diseases
discussion and comments on the draft national plan
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Key publications