Past Studies

Past Studies 22q11.2 deletion syndrome (JUL 2015 - JUL 2017) *Protocol:* 22q11.2 *Case Report Form:* 22q11.2 *Clinical Guidelines:* Multisystem features of 22q11.2  Acute Rheumatic Fever (ARF) (Oct 2007 - Dec...

Contact Us

CONTACT THE APSU* * *The Australian Paediatric Surveillance Unit* Level 2, Kids Research The Children's Hospital at Westmead Locked Bag 4001 WESTMEAD NSW 2145 AUSTRALIA Phone:  + 61 2 9845 3005 Email:  schn-apsu@health.nsw.gov.au[mailto:schn-apsu@health.nsw.gov.au]

Students

APSU Students Past Students Mr Troy Dalkeith (Masters) Dr Arancha Gonzalez (Advanced Trainee) Ms Anna Aminov (Summer Research Scholarship) Dr Sandra Johnson (PhD) Ms Emily Fitzpatrick (Masters) Dr Matilda Anderson (Honours)...

Rare Disease Workshop 2010

Rare Disease Workshop 2010 Presentations 1. Impacts on clinicians and patients Dr Yvonne Zurynski - Rare diseases in Australia: an overview of research and other initiatives Professor Adam Jaffe...

ARC Linkage Grant

ARC Linkage Grant This three year ARC Linkage Grant, commencing in the second half of 2011, aims to research the psychosocial and economic impacts of rare diseases on Australian children,...

Rett Syndrome Workshop 2005

Clinicians Resource Pack - Rett Syndrome *general information on rett syndrome* What is Rett Syndrome? Society for the Study of Behavioural Phenotypes (SSBP) Information  Sheet - Rett disorder About...

Rare Disease Day

Rare Disease Day The 28th of February is Global Rare Diseases Awareness Day. *Did you know that rare diseases are actually common?* There are about 8000 rare diseases affecting an estimated 1.5...

Clinicians Resource Pack - Rare Diseases

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 ...

Useful Links

Rare Disease Resources for Health Professionals and Families educational resources for health professionals: *Orphanet*  *orpha.net*  International web portal for rare diseases and orphan drugs. Provides disease summaries, clinical guidelines (if...

AMOSS

The Australasian Maternity Outcomes Surveillance System *What is AMOSS ?* The Australasian Maternity Outcomes Surveillance System (AMOSS) is a national surveillance mechanism designed to study a variety of rare or...

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