News

News

NEW CAH RESOURCE WEBSITE

The Sydney Children's Hospital at Randwick has recently launched a new website, that provides resources focused at parents of children with CAH, at www.cahpeptalk.com/. Some parts of the site require passowrd access, for intellectual property and copyright purposes. We're hoping to be able to provide access to these areas, for paid members of CAHSGA, in the not too distant future.

NEWBORN SCREENING

Newborn screening (NBS) 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 NBS 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 NBS 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 NBS is included in Australia.

Michelle, our president, recently had the opportunity to discuss NBS with the Hon. Katy Gallagher, Chief Minister and Health Minister of the ACT. Ms Gallagher also sits on the Australian Health Ministers' Advisory Council (AHMAC), the oganisation that governs NBS in Australia. Michelle presented the Chief Minister with this letter:

CAH NBS in Australia

with the following supporting documents:

Letter to MJA - Garry Warne et al

NSW Pilot Study on NBS

European Journal of Endocrinology - CAH NBS article

Harrison's Story

Links to social media and media campaigns

Our online petition for CAH NBS through change.org 

Our Twitter campaign

CLAN's twitter campaign

Interview with ABC

A Scandal

Medical Observer Article

Newborn screening in the USA

Experts push for addition to NBS test

Is it time to commence CAH NBS?

Download CAH NBS Postcard

Quick Links

RareDisease.org (CAH Social Network)
RareDisease.org Social Network (Congenital Adrenal Hyperplasia)
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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