Welcome

Whether you have just heard of Congenital Adrenal Hyperplasia for the first time, or are a frequent vistor to our site, we are glad you found us and hope our site can be of help to you.

We provide support nationally for: 

  • Parents of newly diagnosed children with CAH 
  • Ongoing family needs & education 
  • Adults living with CAH

CAHSGA Inc is working to improve knowledge and services for those diagnosed with CAH.

We are a small not for profit group run entirely by volunteers. Please consider donating to assist us to keep this group a viable support network.

We intend holding some more family days in Brisbane, Melbourne and Sydney in 2012. Check the news pages for latest dates.

IN THE NEWS...Newborn Screening

Newborn screening for CAH is still not routinely tested for in Australia. We are one of the only developed countries who do not test for CAH.

The mortality rate for boys with CAH is higher than that of girls. If we had newborn screening this would not be the case.

Many newly diagnosed baby boys with CAH spend many weeks in Intensive Care Units after becoming critically unwell due to adrenal crisis. If we had newborn screening this would not be happening to our families. With early treatment, children with CAH enjoy a wonderful quality of life.

A delay in diagnosis can be fatal for children with more severe forms of CAH, but even for those with less severe CAH the impact of late diagnosis carries a unique burden. Growth and pubertal development are affected, and children must then consult specialists and take expensive, unpleasant drugs for many years to ensure their development progresses as steadily as possible.

CAHSGA is working with medical professionals and advocacy groups to ensure newborn screening is included in Australia.

Links to social media and media campaigns

Our Twitter campaign

CLAN's twitter campaign

Interview with ABC

A Scandal

Letter to Medical Journal of Australia

Newborn screening in the USA

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There is now a strong push by specialist Paediatric Endocrinologists in Australia (led by the Australasian Paediatric Endocrinology Group - www.apeg.org.au ) to have CAH added to the Newborn Screening (NBS) Program in this country. Moreover, leading experts within Australia’s NBS Program itself are also in favour of CAH being added to the conditions tested. Australia is one of only a few developed countries not to include CAH in its NBS Program – and indeed some of our neighbours in Asia are now leading the way locally (the Philippines, Vietnam, Taiwan and Japan).

There is now a strong push by specialist Paediatric Endocrinologists in Australia (led by the Australasian Paediatric Endocrinology Group - www.apeg.org.au ) to have CAH added to the Newborn Screening (NBS) Program in this country. Moreover, leading experts within Australia's NBS Program itself are also in favour of CAH being added to the conditions tested. Australia is one of only a few developed countries not to include CAH in its NBS Program – and indeed some of our neighbours in Asia are now leading the way locally (the Philippines, Vietnam, Taiwan and Japan).

Quick Links

CAH Australian Message Board (US Based)
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US CAH Support Group
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UK CAH Support Group

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NZ Support Group

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Adrenal Hyperplasia Network

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