Australian CAH Community Noticeboard
CAH Support Group Australia (CAHSGA) is the name of the official CAH Support Group network in Australia.
APEG (Australasian Paediatric Endocrinology Group) is the peak body for specialists working in the field of endocrinology for children in Australia and New Zealand, and has a lot of useful resources and links.
Question: What does the Australian CAH Community URGENTLY need?
CLAN has been collaborating with CAHSGA, APEG and Australian NBS specialists, writing to politicians, health ministers and co-authoring a journal submission, lobbying for change. But so far, nothing.
How many more Australian children need to suffer - or worse, die - before something is done about this situation?
Australia's neighbours are leading the way in NBS - the Philippines screens for CAH, and Vietnam has been trialling screening in South Vietnam and is set to expand screening. It is time Australia caught up.
In the USA, the CARES Foundation have successfully lobbied this issue for years, and CAH is now screened for in every state of America... If you are passionate about seeing change in Australia, then please, get onboard. Write to your local member, lobby the politicians, contact APEG, contact CLAN... get involved! Together we can do it - we MUST do it before MORE Australian children die unnecessarily!!
See these articles in the Medical Journal of Australia
Joyce Y Wu, Sudeep, David M Cowley, Mark Harris, Ivan N McGown and Andrew M CotterillMJA 2011; 195 (5): 260-262
MJA Insights, September 2011 (free access with registration)
The case for newborn screening for congenital adrenal hyperplasia in Australia
Garry L Warne, Katrina L Armstrong, Thomas A Faunce, Bridget M Wilcken, Avihu Boneh, Elizabeth Geelhoed and Maria E Craig — Med J Aust 2010; 192 (2): 107.