The Loop - Nofasd Australia - Issue #10, June 2014

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NOFASD Australia
Issue #10, June 2014
Dear Members & Supporters,
Below are our key areas covered to keep you in The Loop,
This month in "The Loop"
The issue that has raised most attention this month is the Federal government announcement of $9.2 Million to implement a National FASD Strategy.  Links to further information about the plan and comment from NOFASD Australia CEO Vicki Russell can be found in From My Desk.  

The 3rd National Indigenous Drug and Alcohol Conference (NIDAC) was also held in June and had a particular focus on FASD.  Resolutions from the Conference and links to come great FASD presentations can be found in Of Special Interest.

Elsewhere in the newsletter I am sure you will find a variety of news items of interest including links to some new resources.

Hot off the press is the disturbing news that Australia’s Health Ministers at the recent Government forum on Food Regulation meeting, made a decision to not mandate pregnancy warnings on alcohol products.  We will discuss this more fully in our next newsletter.

NOFASD Australia would like to remind our subscribers that this is a community newsletter, so if you have an FASD-related event, story, video, article or any other information you'd like to share with the community, please email it through to Terri at [email protected].  We would be more than happy to include it.

Remember that you can find NOFASD Australia on Facebook and Twitter [@NOFASDAustralia] - I encourage you to follow us there, as well as sharing the NOFASD Community newsletter with your family and friends.

Until next time,

Terri Baran
Administration Officer 
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From My Desk...

Since February 2014, a group of eleven participants have joined in an Australian and New Zealand FASD Consortium of Practice. The group meets monthly by teleconference, has representation from a range of practice areas, and includes parent representatives.  The meetings are hosted by NOFASD Australia and builds on the ‘Call for Action from Australian and New Zealand Parents’ circulated following a pre-conference meeting in Brisbane late last year.

Another exciting development is the first face-to-face FASD parent/carer support group formed in Darwin.  The group's first meeting was held in June.  I was pleased to have the opportunity to join in through Skype. Thanks to Lucja Wajs and Catherine Collier, Fostercare NT, for contacting parents, providing the venue and guiding the meeting. This support group is an outcome of a partnership with Fostercare NT and is the first of many similar ‘parent driven’ support groups which I hope will evolve across the country. As parents and carers most often access support from other parents and carers, I encourage any parents or communities of interest to contact me if you would like to set up a face to face support group. Email [email protected] or phone me on 1300 306 238. 

In the past week an announcement of $9.2 million and a National FASD Strategy was made by the Federal government. NOFASD Australia was unaware of either initiative until the day before. Both the Strategy and the media release are in this newsletter for you to read and you will find there is no provision for addressing the unmet needs of individuals and their families and no opportunity for competitive funding. Influential lobbying certainly influences government decisions and the consequences of such decisions for individuals living with FASDs and their families must be considered. This means more than just "knowing" about FASD and, as one parent put it, "knowledge is not understanding" when it comes to living with FASD day to day and hour by hour. Understanding comes from the stories told by children, adolescents and adults who live with fetal alcohol exposure and those who support them.  In the post-diagnosis phase or in the recognition of ‘risk for FASD’, increasing understanding that FASD is more likely a social condition than a health issue is critical must be acknowledged. 

Finally, on behalf of NOFASD Australia, I acknowledge the song graciously shared by ‘The Sisters of Invention’ (including Jackie Saunders, Annika Hooper, Michelle Hall, Caroline and Aimee Crathern), the producer and co-writer Michael Ross and Pat Rix (Tutti ARTISTIC Director). Take time to listen to the lyrics. Michael Ross advises “The Church on the $50 Note" is Jackie’s song, her first written with The Sisters of Invention. Jackie has Fetal Alcohol Syndrome. It is about her story as the child of a Ngarrendjeri mother from Raukkan and a Wirangu father from out west. The Australian Fifty dollar note features a picture of the Raukkan chapel where Jackie's mum grew up.”  Listen to the song here.

Vicki Russell 
CEO, NOFASD Australia

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Of Special Interest

The 3rd National Indigenous Drug and Alcohol Conference

The 3rd National Indigenous Drug & Alcohol Conference 2014 was held in Melbourne in early June.  It brought together Indigenous and non-Indigenous workers and stakeholders from across Australia to celebrate the great work that is being done to address harmful Indigenous alcohol and drug use.

Presentations from the Conference are now available online including the following with a focus on FASD:

Conference delegates also agreed to a raft of very important resolutions including many specific to addressing FASD:  What works: Doing it our way - Resolutions from the Third National Indigenous Drug and Alcohol Conference.

Congratulations NIDAC for your leadership in this area!

A beautiful song from The Sisters of Invention

"The Church on the $50 Note" is a song written and performed by the Sisters of Invention (Jackie Saunders, Annika Hooper, Michelle Hall, Caroline and Aimee Crathern), co-written and produced by Michael Ross, and Pat Rix (Tutti Artistic Director).  The song is Jackie's song, and her first written with The Sisters of Invention.  Jackie has Fetal Alcohol Syndrome.  It is about her story as a child of a Ngarrendjeri mother from Raukkan and a Wrangu father from out west.  The Australian $50 note features a picture of the Raukkan chapel where Jackie's mum grew up.  Listen to the song here.

Call to Action on Alcohol Advertising 

On Wednesday this week [25th June 2014], the National Alliance for Action on Alcohol (NAAA) hosted a Day of Action on Alcohol Advertising at Parliament House, Canberra. The event was very well attended by NAAA members and supporters, many of whom had travelled considerable distance to attend. 

Highlights of the day included: 

- Presentation of the 2nd Annual report from the Alcohol Advertising Review Board
- Announcement of the Worst Offender in alcohol advertising.  
- Presentations on the nature and extent of alcohol marketing in Australia, the impact on young people, and the regulatory landscape.
- Announcement of the NAAA’s Call to Action on Alcohol Advertising.
- Briefings to parliamentarians 

Presentations were recorded and will be available online shortly for viewing. Keep an eye on NOFASD Australia’s Facebook and Twitter accounts for links to these. 

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National News and Media
New Campaign Encourages New and Expecting Mums to Protect Their Babies by Not Drinking Alcohol
Reducing the impact of alcohol-related harm on unborn and newborn babies is the focus of a new health campaign.  Assistant Minister for Health, Fiona Nash said the Women Want to Know initiative would provide health professionals with better support and training on how to discuss the risks of alcohol consumption with women planning a pregnancy, and with new and expectant mothers.  Read more... 

NIDAC Awards 2014
The winners of the National Indigenous Drug and Alcohol Awards were announced on the 5th June 2014 at the dinner during the 3rd National Indigenous Drug and Alcohol Conference.  These Awards recognise Aboriginal and Torres Strait Islander drug and alcohol workers for their contribution to reducing the harmful effects of drug and alcohol use among Aboriginal and Torres Strait Islander people.  Read more… 
NOFASD Australia congratulates the winners of these Awards and wishes them all the best in their continuing contributions to their communities. 

Western Australians - Request for Assistance
The Telethon Kids Institute is establishing a Community Reference Group to work with our researchers on projects in the area of FASD and Justice. 
They are looking for consumer and community members from across Western Australia (metropolitan, rural, remote) who have an interest and/or experience in:
youth justice (not justice professionals or people working within the Department for Child Protection or Department of Corrective Services)
working with young people who have or are suspected of having a FASD
working with youth whether as a volunteer or for a community organisation
We are also looking for parents and carers of young people who have FASD or who have had some involvement with the justice system.  Read more and apply here... 

Rebuilding a life damaged by alcohol before birth
“Fitzroy Crossing was the epicentre of a 2007 coroner’s inquest into the deaths of 22 people.  The subsequent report reads like a horror story…and more than “half the deaths occurred in the Central Kimberley town, and most of the deaths were by handing or self-inflicted gunshot wounds.  Coroner Alastair Hope has particular concern for Fitzroy Crossing’s next generation, stating “the future appears bleak” for the many who “suffer from foetal alcohol syndrome.” Marmingee Hand is a Walmajarri woman from Fitzroy Crossing and tells a powerful story. Read more…

Australia Looks Into Fetal Alcohol Spectrum Disorder
According to an article from NineMSN, health officials in Australia are now pushing for greater awareness and response for people diagnosed with FASD, especially those involved in court cases.  A parliamentary inquiry in Northern Territory in Australia is being held to shed light on FASD.  Read more… 

Insight, SBS - "Beer Goggles" 10th June 2014
“Stan Grant asks everyday drinkers why they drink – and how much is too much. Are the guidelines for no more than two standard drinks per day realistic?”  Read more...

Survey on information needs of Indigenous Elders and community members
The Australian Indigenous Alcohol and Other Drugs Knowledge Centre (Knowledge Centre) invites you to take our survey to identify the information needs of communities in relation to alcohol and other drugs.
The Knowledge Centre reports information on alcohol and other drugs (AOD) is on their web resource, with some of this information written specifically for Indigenous Elders and other community members who are interested in reducing the harms of alcohol and other drug use in their communities. 
This information will be provided in a ‘Community portal’ available on the Knowledge Centre web resource.
Complete the survey here – it will take 5-10 minutes to complete.

Forum reveals cheap and easy access to alcohol a ‘major community concern’
A forum held by health professions to gauge the pulse of the community on alcohol abuse issues in the Goldfields was held on Monday [16th June] night.  Hosted by the Kalgoorlie Local Drug Action Group (KLDAG), about 40 community members and 20 health professionals convened to discuss the problem and possible solutions to alcohol abuse in the Goldfields.  Read more…

Booze culture hurts kids from before birth
The nation’s harmful relationship with alcohol is damaging children from the womb onwards, a Northern Territory inquiry has heard.  The problem is more visible in remote Aboriginal communities, where drinking rates are high but it can also affect women in urban areas, and its [FASD’s] prevalence is so far unknown.  “What we know is an understatement of the problem,” Menzies School of Health Research director Alan Cass told the inquiry.  Read more…

Injustice being done for young people with FASD
A Children's court magistrate who worked in the Kimberley for two years says injustices are being done when it comes to young people with Fetal Alcohol Spectrum Disorder.  Read more...
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Fetal Alcohol and the Law - Part 1
This video is presented by David Boulding and Lawyer in Criminal and Family Courts in Canada.  Read more...

NOFAS Weekly Roundup 
The NOFAS Weekly Roundup features the latest news articles, research, community events, policy updates, resources, and other highlights from around the world of FASD. The Roundup is emailed to subscribers every Monday, and it also includes the latest news from NOFAS. Read more… 

Australian Indigenous Alcohol and Other Drugs Knowledge Centre 
The Knowledge Centre builds on the Substance use section of the Australian Indigenous Health InfoNet to provide a dedicated web resource for reducing harms from alcohol and other drug use in Aboriginal and Torres Strait Islander communities. The Knowledge Centre supports practitioners by providing AOD knowledge support and decision support materials including publications, reviews, health practice resources, programs, organisations, conferences/events, funding and job opportunities. There is also a new section on FASDs. Read more… 

ADIN goes Mobile 
The Australian Drug Information Network (ADIN) reviews alcohol and other drug websites and apps helping you find reliable information on alcohol, drugs and mental health issues. When you search on your mobile device, you can find help and support services across the country from the palm of your hand.  Read more... 

“Understanding Fetal Alcohol Spectrum Disorder – a Guide to FASD for Parents, Carers and Professionals” by Maria Catterick and Liam Curran 
Understanding Fetal Alcohol Spectrum Disorder (FASD) is a useful introduction to the most common non–genetic learning disability, which is caused by alcohol consumption during pregnancy. The Guide describes how alcohol can harm the fetus and disrupt development, and explains how FASD affects individuals at different stages of their lives. With the aid of simple, illustrative diagrams, photographs and charts, it shows how you can identify FASD, and gives guidance on how mothers at risk can be helped, and provides advice for parents or carers on how children, young people and adults with FASD can be best supported. Read more…  

Latest Newsletter from the Canada FASD Research Network
This newsletter summarises the common neurobehavioural features of FASD found in current research and provides intervention resources specific to many neurobehavioural difficulties.  The newsletter this month includes an interview with a young woman diagnosed with FASD, a spotlight on research and research programs, and upcoming events. Subscribe to the newsletter now - read more… 

Bissell Centre FASD Music Video 
Bissell Centre and EFAN teamed up to create this music video on Fetal Alcohol Spectrum Disorder to raise awareness and to educate the community. Watch the video... 

“7 Things I Just Learned About FASD” 
“Last week I finished a seven week webinar presented by an organization called Families Affected by Fetal Alcohol Spectrum Disorder or FAFASD. While some of this I may have had an idea about, much of it was brand new information I have not heard in my eight year experience of parenting a child with FASD. So here is my list of 7 things I didn’t know before that I know now.” Read more…  

Why is FASD diagnosis so important? [USA] 
Tatyana Elleseff of Smart Speech Therapy LLC: “Recently, I’ve participated in various on-line and in-person discussions with both school-based speech language pathologists (SLPs) as well as medical health professionals (e.g., neurologists, pediatricians, etc.) regarding their views on the need of formal diagnosis for school aged children with suspected alcohol related deficits. While their responses differed considerably from: “we do not base intervention on diagnosis, but rather on demonstrated student need” to “with a diagnosis of ASD ‘these children’ would get the same level of services“, the message I was receiving loud and clear was: “Why? What would be the point?” So today I decided to share my views on this matter and explain why I think the diagnosis matters.” Read more…

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International News and Media

Alcohol & Me:  Judge Michael Jeffery [Canada]
Barrow judge Michael Jeffery has made several changes to the way he runs his court to try to provide fair treatment for defendants who may be affected by a fetal alcohol spectrum disorder.  (Video by Marc Lester and Kyle Hopkins / Anchorage Daily News).  Read more... 

Sharp rise in babies born with fetal alcohol syndrome [UK]
The number of diagnosed cases of fetal alcohol syndrome in those born to women who drink during pregnancy has tripled since records of the debilitating condition were first kept 16 years ago.  In 2012-2013, there were 252 diagnoses of the syndrome, which can leave victims severely mentally and physically impaired, compared with 89 in 1997-98.  Cases are up 37% since 2009-2010.  Read more…

NOFAS Awards Reception 2014
On June 10, NOFAS [USA] honoured champions in the field of FASDs at their 25th Anniversary Awards Reception.  This special evening, “Bringing Advocates Together”, united NOFAS affiliates, individuals and families living with FASDs, and advocates and people in recovery that support alcohol-free pregnancies.   Read more...

Dad's Alcohol Consumption could influence Sons' Drinking, Pitt Mouse Study Finds
Even before conception, a son's vulnerability for alcohol use disorders could be shaped by a father who chronically drinks to excess, according to a new animal study from the University of Pittsburgh School of Medicine.  Read more… 

Living with FASD is like “bubbles”: speaker [Canada]
The body of a person with FASD is filled with bubbles, a speaker told those gathered June 6 for the first day of a two-day conference on Fetal Alcohol Spectrum Disorder (FASD).  “I have in my body what I call bubble troubles,” said Myles Himmelreich, who was diagnosed with FASD at age three.  What he meant by that, he explained, is that FASD is felt not only psychologically but also in the body through a restlessness.  Read more…

FASD Program coming to Keewatin Public School [Canada]
A third Fetal Alcohol Spectrum Disorder program is coming in under the Keewatin Patricia District School Board.  The board is introducing a program at Keewatin Public School in Kenora.  Superintendent of Education, Joan Kantola, spoke about from of the important lessons they’ve learned from their two existing programs in Dryden and Sioux Lookout.  Read more…

Manitoba Liquor & Lotteries donates $1.35M for FASD research [Canada]
Manitoba Liquor and Lotteries is donating $1.35 million for research into fetal alcohol spectrum disorder.  In a news release Tuesday [27th May 2014], the Crown agency said the money will go towards researched [sic] aimed at improving early diagnosis, intervention and prevention of FASD.  Read more…

Why is FASD diagnosis so important? [USA] 
An excellent article from Smart Speech Therapy LLC, an American organisation that performs comprehensive speech language assessments and design detailed intervention programs for children with identified or suspected FASD. Read more…

Alaska to offer free pregnancy tests in bars in curb fetal alcohol syndrome [USA]
As the state with the highest rates of fetal alcohol syndrome (FAS) in the U.S., Alaska is introducing a new campaign aimed at preventing pregnant women from drinking, the Anchorage Daily News reported.  Starting in December, pregnancy tests will be placed in the bathrooms of 20 bars and restaurants across the state.  Read more... 

FASD school program engages students with video game [Canada]
Students with Fetal Alcohol Spectrum Disorder at David Livingston School have the opportunity to participate in a new program designed for the PlayStation generation.  The school is at the forefront of FASD research, with a class designed for the needs of kids with the disorder.   Read more…

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Latest Research
A critical review of public health interventions aimed at reducing alcohol consumption and/or increasing knowledge among pregnant women
F. Crawford-Williams, A. Fielder, A. Mikocka-Walus & A. Esterman, Drug and Alcohol Review, 20 May 2014
It is well established that alcohol can cross the placenta to the fetus and can affect both physical and psychological development of the infant; however, many women continue to drink during pregnancy. It is therefore important to determine whether interventions can be successful in reducing alcohol consumption among pregnant women. Past reviews have investigated the effectiveness of clinical interventions in reducing alcohol consumption in pregnancy; however, the aim of the current review was to focus on the effectiveness of public health interventions.   Read more…  

Dysmorphic Effects of First Trimester-Equivalent Ethanol Exposure in Mice:  A Magnetic Resonance Microscopy-Based Study
S.E. Parnell, H.E. Holloway, L.K. Baker, M.A. Styner & K.K. Sulik, Alcoholism: Clinical and Experimental Research, 13 June 2014
This investigation utilised high resolution magnetic resonance microscopy (MRM)-based analyses to examine the dysmorphology resulting from maternal dietary EtOH intake occurring during selected first trimester-equivalent time periods. The results illustrate the teratogenic impact of maternal dietary EtOH intake occurring at time periods approximately equivalent to weeks 3 through 6 (GD 7 to 11 in mice) and weeks 7 through 12 (GD 12 to 16 in mice) of human gestation, further documenting EtOH's stage of exposure-dependent neuroteratogenic end points and highlighting the vulnerability of selected brain regions during the first trimester. Additionally they suggest that clinical attention should be paid to fetal hydrops as a likely component of FASD.   Read more…

Apoptosis of Alcohol-Exposed Human Placental Cytotrophoblast Cells is Downstream of Intracellular Calcium Signaling
J.M. Bolnick, R. Karana, P.J. Chiang, B.A. Kilburn, R. Romero, M.P. Diamond, S.M. Smith & D.R. Armant, Alcoholism: Clinical and Experimental Research, 29 May 2014
The role of Ca2+ signalling in EtOH-induced apoptosis was examined using human first trimester cytotrophoblast cell lines, examining the hypothesis that apoptosis is dependent on intracellular Ca2+ signalling. EtOH-induced apoptosis in human cytotrophoblast cells, identified by DNA fragmentation and externalized phosphatidylserine, was dependent upon Ca2+ signaling. Both intracellular Ca2+ mobilization and extracellular Ca2+ influx were required, as well as phosphatidylinositol signaling. Inhibition by SKF-96365 suggests that the capacitative Ca2+ entry mechanism that utilizes TRPC channels was activated by EtOH. Apoptosis occurs downstream of Ca2+ signaling in trophoblasts and may contribute to placental insufficiency and poor fetal growth associated with FASD.     Read more... 

Maternal alcohol consumption in pregnancy enhances arterial stiffness and alters vasodilator function that varies between vascular beds in fetal sheep
H.C. Parkington, K.R. Kenna, F. Sozo, H.A. Coleman, A. Bocking, J.F. Brien, R. Harding, D.W. Walker, R. Morley & M Tare, The Journal of Physiology, 23 May 2014
To date, the effect of maternal alcohol consumption in pregnancy have focused on neurodevelopmental outcomes, with the impact on the arterial system poorly understood.  In this study, the researchers investigated the effects of moderate maternal alcohol consumption (~3 standard drinks per day) in late pregnancy on the ability of arteries in the fetus to relax, and hence deliver blood, and on arterial stiffness in five important organs.  Maternal alcohol consumption in late pregnancy resulted in a marked increase in stiffness in arteries of the heart, kidney, gut, leg muscle and brain in the fetus, and this could slow contraction and relaxation and overall blood delivery.  Coronary artery endothelial vasodilator function was severely blunted as a result of alcohol exposure, while in contrast endothelium-dependent relaxation in renal and mesenteric arteries was enhanced.  Together, the results of the study provide a warning for pregnant women and their carers that maternal consumption of ~3 standard drinks per day, levels that do not evoke physical abnormalities or growth restriction, can dramatically alter arterial function in the fetus.   Read more…

Education, safe drinking practices and fetal alcohol spectrum disorder in the Kimberley region of Western Australia
P.S. Kavanagh & J.S. Payne, Journal of Paediatrics and Child Health, 9 June 2014
There are alarming rates of fetal alcohol spectrum disorder (FASD) in the Kimberley region of Western Australia despite numerous international studies demonstrating the links between alcohol consumption during pregnancy and FASD.  The aim of this research was to help determine factors that may be associated with correct knowledge about safe drinking practices during pregnancy, with these factors used to help inform future interventions.  The findings suggest that early education regarding the consequences of alcohol consumption for women of childbearing age should be paramount in this or similar communities.  Suggestions for targeted interventions are discussed in light of these findings.  Read more... 

Single-session motivational intervention to decrease alcohol use during pregnancy
R.L. Osterman, A.C. Carle, R.T. Ammerman & D. Gates, Journal of Substance Abuse Treatment, January 2014
This randomised clinical trial tested the effectiveness of a single-session of motivational interviewing (MI) to decrease alcohol use during pregnancy, while examining theory-based mechanisms of the intervention.  Eligible pregnant women who drank any amount of alcohol in the previous year (n=122) were randomised to an intervention or comparison group  Although MI was not found effective in decreasing alcohol use, low levels of reported alcohol use by the women at baseline left little room for improvement due to the intervention.  To prevent fetal alcohol spectrum disorders, future studies will use self-report and biomarkers to more accurately identify women in need of interventions to reduce their risk of alcohol-exposed pregnancies.  Read more… 

Gross Motor Deficits in Children Prenatally Exposed to Alcohol: A Meta-analysis
B.R. Lucas, J. Latimer, R.Z. Pinto, M.L. Ferreira, R. Doney, M. Lau, T. Jones, D. Dries & E.J. Elliot, Pediatrics, 9 June 2014
Gross Motor (GM) deficits are often reported in children with prenatal alcohol exposure (PAE), but their prevalence and the domains affected are not clear.  The objective of this review was to characterise GM impairment in children with a diagnosis of fetal alcohol spectrum disorder (FASD) or “moderate” to “heavy” maternal alcohol intake.  The results suggest evaluation of GM proficiency should be a standard component of multidisciplinary FASD diagnostic services.  Read more…  
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Upcoming Events

Remember to visit our events page on our website for a full listing of upcoming events. 

Interested in the furture of NDIS?
DATE:  9th July 2014
DETAILS:  Chair Bruce Bonyhady is speaking at the National Press Club of Australia on July 9th.  For more information and registration, click here.
Australian Childhood Foundation – Childhood Trauma: Understanding the Basis of Change and Recovery - Melbourne 
DATE: 4th – 8th August 2014 
DETAILS: In this unique event, the Australian Childhood Foundation has assembled thought leaders in interpersonal neurobiology, trauma and therapy in a conference format that promises to engage, challenge and integrate perspectives about working with children, young people and families. The conference has three separate components, each offering options for participants to follow their own interests and plan a program that is specific to their learning objectives. For more information and to register, click here. 

Third European Conference on FASD – Rome, Italy 
DATE: 20th – 22nd October 2014 
DETAILS: Building on the success of the first and second conferences, EUFASD is pleased to announce the third European conference on FASD, to be held in Rome. The aim of these conferences is to bring together European researchers, public health workers and FASD-related NGOs to share knowledge and promote collaborations. Presentation will cover latest development worldwide, with an emphasis on European experience. For more information and registration, click here.
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NOFASD Australia is supported by funding from the Australian Government under the Health System Capacity Development Fund.

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1300 306 238
[email protected]

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PO Box 206, Normanville , SA 5204

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