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21. Australian Pituitary Foundation (APF) - National Office

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Provides support and information about pituitary disorders. Activities include presentation of patient information seminars, dissemination of pituitary condition educational materials, raising awareness of pituitary patient issues, providing… 

Website
1300 331 807
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22. Bowel Group for Kids Inc (BGK)

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Provides information, education and support to families who have children born with a congenital bowel disorder such as Hirschsprung disease or anorectal malformations (imperforate anus). 

Website
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23. Charcot Marie Tooth Association of Australia Inc (CMTAA)

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Provides support to families affected by CMT through a range of services including newsletters, seminars, advice for exercising affected limbs and up to date information on research into CMT. 
Concord Repatriation Hospital, NSW

Website
0458 630 631
Map Directions
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24. CICADA Australia Inc

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Provides support and advice for pre and post cochlear implantees and families. Also provides opportunities to meet others socially and share information. Monthly morning teas and weekend social BBQs and Guest Speaker 4 times per year. 
Gladesville, NSW

Website
Map Directions
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25. Continence Foundation of Australia Ltd (CFA)

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Continence Foundation of Australia provides information around bladder and bowel health. The continence foundation of Australia provides free information on funding, referral and products. Also provided resources for individuals, careers and… 
Surrey Hills, VIC

Website
03 8692 8400 (Office
Map Directions
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26. Australian Donor Conception Network

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Provides support through the website to those contemplating the use of donor sperm/egg/embryo, to existing parents, to anyone conceived in this way and past/present donors. 

Website
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27. Fragile X Association of Australia Inc

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Provides services and support to people affected by Fragile X syndrome and its related conditions and to their families and carers, including a free FX counselling service (Zoom or phone). Hosts educational webinars. 
Brookvale, NSW

Website
1300 394 636
Map Directions
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28. Gaucher Association of Australia and New Zealand

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Promotes awareness of Gaucher Disease and provides support to families. 

0414 564 069
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29. Haemochromatosis Australia

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Provides support, advocacy and information for people affected by haemochromatosis and their families. 

Website
1300 019 028
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30. Heart Support Australia (HSA) Ltd Head Office

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National Peak Body and volunteer heart patient support organisation with a network of branches around Australia. Provides socialisation, information and support to heart patients and their families. 
Phillip, ACT

Website
02 6253 0097
Map Directions
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31. Hydrocephalus Support Association Inc

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Support group for people affected by hydrocephalus. Support includes quarterly meetings and newsletter, resource materials, national conference every three years, Facebook support group for those affected by hydrocephalus, phone support… 
Hurstville, NSW

Website
02 9586 1057
Map Directions
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32. Laryngectomee Association of Victoria Inc

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Provides information and support to laryngectomees and those with similar vocal conditions. Social Gatherings via 'zoom' fortnightly on Thursday at 2pm. 
South Yarra, VIC

Website
03 9808 9264 (secret
Map Directions
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33. Australasian Lymphology Association

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Provides information and support to people with lymphoedema including publication of quarterly newsletter, printed materials and seminars. Able to provide details of branches throughout Victoria and details of therapists who specialise in… 

Website
1300 935 332
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34. Motor Neurone Disease Australia Inc (MNDA)

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This umbrella organisation for state Motor Neurone Disease associations encourages flow of information internationally and within Australia. It influences policy, provides information, raises awareness, and promotes and funds MND research. 
Deakin, ACT

Website
02 8287 4980
Map Directions
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35. Muscular Dystrophy Association

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Provides support, information and assistance for people with neuromuscular disorders Nationally. Services include NDIS co-ordination of supports, local connections, virtual and in-person activities and educational activities. Two wheelchair… 
North Melbourne, VIC

Website
03 9320 9555
Map Directions
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36. Children's Tumour Foundation

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The CTF is the only national support organisation for people impacted by all of types of Neurofibromatosis and Schwannomatosis. The CTF provides a national NF Helpline, clinical nurse specialists in two major children’s hospitals, NF camps 
Concord, New South Wales

Website
02 9713 6111
Map Directions
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37. Cancer Australia

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Aims to reduce the impact of cancer by translating worldwide research into evidence based information-improving health service delivery, strengthening national data capacity informing people with cancer about their diagnosis and treatment… 
Surry Hills, NSW

Website
02 9357 9400, 1800 6
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38. Osteogenesis Imperfecta Society of Australia

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Provides information and support including newsletter and biennial conference, to families affected by this condition. Can also provide contact details of local support groups. Email enquiries through the website. 

Website
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39. Palliative Care Australia Inc

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Palliative Care Australia (PCA) is the national peak body for palliative care. PCA represents all those who work towards high quality palliative care for all Australians who need it. Working closely with consumers, our Member Organisations… 
Griffith, ACT

Website
02 6232 0700
Map Directions
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40. PKU (Phenylketonuria) Association of NSW Inc

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Provides support and information about PKU or Phenylketonuri. The Association is based in and around Sydney, NSW Australia but our members are in all states of Australia. 

Website
0418 234 922, 0414 2