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Rare Disease Educational Workshop


Rare Disease Educational Workshop

The Australian Paediatric Surveillance Unit will host a two day educational workshop to mark International Rare Diseases Day 2014.

WHEN: 14 (Friday) and 15 (Saturday) March 2014

WHERE: Kids Research Institute, The Children’s Hospital at Westmead 

 Day 1: Friday is designed for health professionals, policy makers and researchers and is centred on “Recent developments in rare diseases research, health serviced and policy”

The programme will include sessions on diagnosis of rare diseases including the latest on genetic testing; the psychosocial impacts of rare diseases on families; health services utility and needs; and the role of rare disease registries to support research and clinical care.

 Cost $50.00 (includes morning tea, lunch and afternoon tea)

*Trainee health professionals and students in the Sydney Children’s Hospitals Network – NO CHARGE but you must register as numbers are limited

Day 2: Saturday is designed for parents, carers and support groups. The focus of day 2 is “Exploring the impacts of rare diseases – your child, your family and the health system”

Preliminary results from a family survey on the impacts of rare diseases conducted under the APSU ARC Linkage Grant will be presented. The afternoon session will include focus group discussions about the out-of-pocket expenses incurred by families while caring for a child with a rare chronic condition and financial support needs of families.

All parents, young people, carers and support groups are welcome no matter which disease or condition your child has.

*Please note this is an adults only workshop (young people are welcome to attend)

Click here for Day One program and registration

Click here for Day Two program and registration


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