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121. Sleep Disorders Australia (SDA)

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Voluntary Not for Profit organisation that provides information and offers support and assistance to people and their families who are affected by sleep disorders throughout Australia. We also advocate for the needs of people affected by… 

Website
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122. 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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123. 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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124. Dietitians Australia

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The professional body for nutrition and dietetic professionals, representing over 9000 members and is Australia's largest advocate for food and nutrition issues. 
Phillip, Australian Capital Territory

Website
02 6189 1200
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125. Australian Physiotherapy Association - National Office

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National professional association with more than 29,000 members. 
Camberwell, VIC

Website
03 9092 0888
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126. 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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127. 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
0439 882 053
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128. Australian Pompe Association

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

Website
0418 966 509
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129. 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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10

130. 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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131. 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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132. 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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133. 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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14

134. 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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15

135. 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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16

136. 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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137. 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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18

138. 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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19

139. Standards Australia

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Not-for-profit organisation supported by all sectors of the Australian community. Issues standards of acceptability in relation to provision of services etc., including AS1428 on access design, which incorporates standards for general… 
Sydney, NSW

Website
1800 035 822, 02 923
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140. Deafness Forum of Australia

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Deafness Forum is the peak national body representing the interests of Australians who are deaf, have a hearing loss, an ear or balance disorder, and their families. 
Braddon, ACT

Website
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