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101. Von Hippel-Lindau Family Alliance Australia (VHL Alliance)

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Provides information for families and physicians about Von Hippel-Lindau disease, and runs local self-help support groups. Dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected. 

Website
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102. SOFT Australia

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Parent support group for those affected by a rare Trisomy (duplication) disorder including full, partial, mosaic and ring, regardless of chromosome number. Provides information and emotional support and has representatives in most states. 

Website
0407 820 560
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103. Dietitians Australia

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The professional body for nutrition and dietetic professionals, representing over 8500 members and is Australia's largest advocate for food and nutrition issues. Dietitians Australia also provides information for the public regarding local services 
Phillip, Australian Capital Territory

Website
02 6189 1200
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104. DES Action Australia Inc

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Provides information, support to families affected by DES (stilboestrol) and other oestrogens prescribed from 1938 onwards - known side effects of treatment include: infertility, reproductive problems, autoimmune disease and cancer. 

Website
0410 864 636
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105. Australian Council of Natural Family Planning (ACNFP) Inc

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Peak body for a group of organisations providing personal instruction in the use of natural family planning methods for avoiding or achieving pregnancy. Can provide details of contact telephone numbers throughout Australia. 

Website
1800 114 010
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106. Australian Pompe Association (APA)

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Support group for people affected by Pompe disease, their families and friends. 

Website
02 9629 2842
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107. SANE

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SANE offers a range of free digital and telehealth support services for people over 18 years of age with complex mental health needs, and their family, friends and carers. We also provide mental health support to people with intellectual disability 
South Melbourne, VIC

Website
1800 187 263
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108. Cerebellar Ataxia Australia Inc.

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Provides support and information for people with cerebellar ataxia, their families and carers. Information available on research opportunities when they become available. 

Website
0428 589 717; 0402 2
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109. Cardiomyopathy Association of Australia Ltd

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Provides information and support and promotes public awareness of Cardiomyopathy. 

Website
1300 552 622 (Inform
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110. Australian Action on Pre-Eclampsia Inc (AAPEC)

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Provides support for people affected by pre-eclampsia, HELLP Syndrome and eclampsia. 

Website
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111. Meningitis Centre Australia Inc

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Provides support to meningitis sufferers and their families and produces educational material for parents, community members and health professionals. 
Nedlands, WA

Website
1800 250 223
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112. Australian Institute of Health and Welfare (AIHW)

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National agency set up by the Australian Government under the Australian Institute of Health and Welfare Act to provide reliable, regular and relevant information and statistics on Australia's health and welfare. The aim is to improve the… 
Bruce, ACT

Website
02 6244 1000
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113. Stickler Syndrome Australia

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Provides support to families affected by Stickler syndrome. Facebook is a closed group - acceptance needed to join group. 
Kallangur, QLD

Website
07 3886 0665
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114. Immune Deficiencies Foundation Australia (IDFA)

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To educate and raise awareness of immune deficiencies - both primary (genetic) and secondary (from transplantation, disease, chemotherapy or other treatments), within the general and medical communities. To provide education and emotional… 

Website
1800 100 198
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115. The Shepherd Centre - Telehealth all over Australia

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Not-for-profit providing specialised programs for children with hearing loss and their families. 
Newtown, NSW

Website
1800 020 030
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116. ACT Gambling Counselling and Support Service

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Free and confidential 24-hour gambling and financial counselling and support service, available in-person and telephone. Assistance in many languages other than English available. Calls from mobile phones incur charges. 
Deakin, ACT

Website
1800 858 858; 02 612
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117. Australian Red Cross - Social Inclusion Programs

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Social Inclusion Programs and Meals on Wheels. This service provides nutritious meals (fresh or frozen) all year round, as well as checking on how a person is going. Telecross provides a free, daily phone call by volunteers to people who… 
Garran, ACT

Website
02 6234 7663
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118. Family Drug Support (FDS)

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Offers information and support for parents, family members and close friends of people using alcohol or other drugs 

Website
1300 368 186 (24 hou
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119. Spinal Cord Injuries Australia (SCIA) - Central Office

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Spinal Cord Injuries Australia (SCIA) has supported people with spinal cord injury (SCI) and other physical and neurological disabilities for over 50 years. 
Little Bay, NSW

Website
1800 819 775
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120. Australian Tinnitus Association (NSW) LTD

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The organisation provides support, information, resources and phone counselling to people with tinnitus and the associated symptoms of tinnitus so that the tinnitus community can better cope with tinnitus. 
Mascot, NSW

Website
02 8339 1899
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