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Thursday, 20 September 2012
Page: 11428

Ms ROWLAND (Greenway) (13:52): I rise to mention the fantastic work of the Australian Rare Chromosome Awareness Network and the efforts of my constituent Patricia Jonas, who is the NSW ARCAN president. Since there is very little information for families with children or family members who have a rare chromosome disorder or rare disease, ARCAN was created by parents as a not-for-profit organisation to raise awareness of rare chromosome disorders and to help families find the services and support they need when they have a child with a rare chromosome disorder or disease. They do this by providing direct relief through online support and in social settings. They do a fantastic job in creating a place where individuals and families can all feel accepted and supported.

On 4 September, I met with Patricia and her beautiful daughter, Georgia, to learn about what it is like raising a child with a rare chromosome disorder. As Patricia has stated:

There are thousands of families who do not even know where to turn when they get a diagnosis of a rare condition and it is a very daunting time.

I walked that path when Georgia was diagnosed and I don't think any family should have to go through that.

What would you do if you have just found out that the child you thought was going to be perfectly healthy has a rare chromosome disorder and no one in the world knows what their future holds?

Patricia's story is sadly not uncommon in our society. It can be extremely difficult for families affected by these disorders. Georgia's chromosome 5 disorder was not diagnosed—and my understanding is that it would be impossible to diagnose—in the prenatal stage. All Patricia knew was that her baby bump seemed to be unusually large. I encourage anyone in the House or tuning into the broadcast who is interested in the work of the Australian Rare Chromosome Awareness Network to visit their website,