The following is a list of support groups and organisations that support people with genetic conditions in Victoria. If you are looking for information about organisations specialising in advocacy for people with genetic conditions, please visit our advocacy page. If you know of any groups who aren't covered here, or if your details have changed, please email us at info@gsnv.org.au.
Note: NSW groups are highlighted in yellow, NT groups in orange, and WA groups in pink. Groups based in country Victoria are highlighted in green.
Androgen Insensitivity Syndrome Support Group (AIS)
www.vicnet.net.au/~aissg |
PO Box 1089
Altona Meadows
Vic 3028 |
Contact: Anthony Briffa
(03) 9315-8809
aissg@iprimus.com.au |
Angelman Syndrome Support Group
www.angelmansyndrome.org |
18 Baker St
Lilydale
Vic 3140 |
Contact: Heather Church
(03) 9735-4877 |
Anglicare Parentzone
See also under 'P' for Parent to Parent organisations
www.anglicarevic.org.au/parentzone |
16 Railway Pl
Ringwood
Vic 3134 |
Contact: Chris Hanly
(03) 9876-8945 |
Anxiety Recovery Centre Victoria
www.arcvic.com.au |
PO Box 358
Mt. Waverley
Vic 3149 |
Contact:
arcmail@arcvic.com.au |
Aural Atresia and Microtia Support & Information |
5 Fontayne Crt
Frankston
Vic 3199 |
Contact:
kewipl@bluep.com |
Aussie Hands
www.aussiehands.org |
Box 8
Coburg Vic 3058 |
Contact:
(03) 9354 0324
info@aussiehands.org |
Aussie Hemi Support Group (Hemihypertrophy)
http://au.msnusers.com/AussieHemihypertrophySupportGroup/ |
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Australasian Turberous Sclerosis Society
www.atss.org.au |
17 Linksview Rd
Springwood
NSW 2777 |
Contact:
1300 733 435
info@atss.org.au |
Australian Arthrogryposis Group (TAAG)
www.taag.org.au |
'Berriga'
Fishers Hill Rd
Vacy
NSW 2421 |
Contact: Jacqueline Brand
(02) 4938 8060
berriga@telstra.com |
Australian Crohn's and Colitis Association (ACCA)
www.acca.net.au |
PO Box 201
Mooroolbark
Vic 3138 |
Contact:
(03) 9726 9008
info@acca.net.au |
Australian Ectodermal Dysplasia Support Group (ozED)
www.ozed.org.au |
8 Dalmatia Crt
Rowville
Vic 3178 |
Contact:
(03) 9755 5626
info@ozed.org.au |
Australian Ehlers Danlos Support Group (ozED)
http://groups.msn.com/AustralianEhlersDanlosSupportGroup |
|
Contact: Julie
julieroberts@gotalk.net.au |
Australian Holoprosencephaly Support Group
http://groups.yahoo.com/group/ausholoprosencephaly |
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Contact: Lee-Anne
0409 444 863
ausholoprosencephaly@yahoogroups.com |
Australian Huntington Disease Association (Vic) Inc. (AHDA)
www.ahda.com.au |
PO Box 60
Holmesglen
Vic 3148 |
Contact:
(03) 9563 3922
ahdavic@bigpond.net.au |
Australian Jeune Syndrome Association
http://home.vicnet.net.au/~jeunesyn
|
7 Cathcart St
Maidstone
Vic 3012 |
Contact: Claudine
claudinespinner@optusnet.com.au |
Australian Leukodystrophy Support Group Inc. (ALDS)
www.alds.org.au |
10 Mitchell St
Mentone
Vic 3194 |
Contact: Julie Thomas
(03) 9584-7070
mail@alds.org.au |
Australian Spasmodic Torticollis Assoc. (ASTA)
www.asta.asn.au
|
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Contact: Laraine McAnally
(02) 4754 2920
just4grisoft@optusnet.com.au
or: Jan Hoffman
(03) 9723 6651 |
| Australian Sturge-Weber Support Group |
|
Contact: Jo Stanford
(03) 9762 4630
aswsg@alphalink.com.au
|
Australian Wolf-Hirschhorn Syndrome Support Group
http://home.vicnet.net.au/~awhssg |
25 Baker Rd
Invergowrie
NSW 2350 |
Contact:
bectamumbi@bigpond.com |
Autism Victoria
www.autismvictoria.org.au |
PO Box 235
Ashburton
Vic 3147 |
Contact: Amanda Golding
(03) 9885 0533
admin@autismvictoria.org.au |
CAH Support Group Australia
www.cah.org.au |
PO Box 100, CAHSGA Inc
Mitcham
Vic 3132 |
Contact: Linda Powell
(03) 9513-9255
lindapowell@optusnet.com.au |
Cancer Information and Support Service
www.cancervic.org.au |
The Cancer Council Victoria
1 Rathdowne St
Carlton
Vic 3053 |
Contact:
(03) 9635-5000
enquiries@cancervic.org.au
|
Cardio-Facio-Cutaneous (CFC) Family Network Australia
www.cfcsyndrome.org |
PO Box 175
Noonamah NT 0837 |
Contact: Judy Bartolo
(08) 8988 6065 (after hours) |
Cardiomyopathy Association of Australia (CMA)
www.cmaa.org.au
|
|
Contact: 1300 552 622
(24hr message bank service);
or Heartline 1300 362 787;
or (03) 5688 1400
kathleencw@dcsi.net.au |
Charcot-Marie Tooth Association Australia (CMTAA)
www.e-bility.com/cmtaa/ |
|
Contact:
(02) 9767-5105
cmtaa@telstra.com
or: Bob Hayes (Vic Co-ordinator)
(03) 9723-3595 |
CHARGE Syndrome Association of Australasia
http://www.austcharge.com.au |
|
Contact: Madelene Rich - Parent Director
(02) 9605 8475
austcharge@hotmail.com |
Cherubs Australia
The Association of Congenital Diaphragmatic Hernia, Research, Advocacy & Support
http://au.geocities.com/ozcherubs/ |
4 McLean St
Morwell Vic 3840 |
Contact: Danielle
(03) 5135 6999
kessam@tpg.com.au |
CleftPALS Victoria
www.cleftpalsvic.com
|
PO Box 2352
Oakleigh
Vic 3166 |
Contact:
(03) 9782-1594
cleftpalsvic1@hotmail.com |
Collective of Self-Help Groups (COSHG)
www.coshg.org.au |
PO Box 251
Brunswick East
Vic 3057 |
Contact: Christine or Gary
(03) 9349-2301
info@coshg.org.au |
| Congenital Adrenal Hyperplasia - see CAH Support Group Australia above |
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Congenital Diaphragmatic Hernia - see Cherubs Australia above |
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Connect Groups
Support Groups Association WA Inc (previously WISH)
www.connectgroups.org.au |
PO Box 8140
Perth Business Centre
WA 6849 |
Contact:
(08) 9228 4488
1800 195 575 (Freecall)
(08) 9228 4490 (Fax)
info@connectgroups.org.au |
Cornelia de Lange Syndrome Australasia Association (CdLS)
www.cdlsaus.org |
PO Box 20
Putney
NSW 2112 |
Contact: Jenny Rollo
jennyrollo@bigpond.com |
Cri Du Chat Support Group of Australia
www.criduchat.asn.au |
104 Yarralumla Dr
Langwarrin
Vic 3910 |
Contact:
(03) 9775 9962
info@criduchat.asn.au |
| Crohn's and Colitis - see under 'A' for Australian Crohn's & Colitis Association |
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Cystic Fibrosis Victoria (CF)
www.cfv.org.au |
80 Dodds St
Southbank
Vic 3006 |
Contact: Sarah Gliddon
(03) 9686-1811
or free call 1800 633 685
support@cfv.org.au |
Diabetes Australia - Victoria
www.dav.org.au |
570 Elizabeth St
Melbourne
Vic 3000 |
Contact:
1300 136 588
mail@dav.org.au |
Down Syndrome Association Victoria (DSAV)
www.downsyndromevictoria.org.au |
219 Napier St
Fitzroy
Vic 3063 |
Contact:
(03) 1300 658 873
info@dsav.asn.au
|
Dystrophic Epidermolysis Bullosa Research Association (DEBRA)
www.debra.org.au |
PO Box 186
Burwood
Vic 3125 |
Contact: Deb Holmes (Vic Co-ordinator)
(03) 9845 8034
enquiries@debra.org.au |
Ectodermal Dysplasia - see under 'A' for Australian Ectodermal Dysplasia Support Group (ozED) above |
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| Ehlers Danlos Syndrome - see under 'A' for Australian Ehlers Danlos Support Group above |
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Epilepsy Foundation of Victoria Inc.
www.epinet.org.au |
818 Burke Rd
Camberwell
Vic 3124 |
Contact:
(03) 9805-9111
epilepsy@epilepsy.asn.au |
Fabry's Support Group Inc
www.fabry.net.au |
|
Contact: Megan
(03) 9497 8017
info@fabry.net.au |
Facial Paralysis/Moebius Syndrome
http://groups.msn.com/kidswithfacialparalysis |
|
Contact: Karin
kthompson5@optusnet.com.au |
Families of Children with a Disability Support Group (FOCDSG)
www.focdsg.org.au |
49 Forest St
Bendigo
Vic 3550 |
Contact: Kathy Reardon
(03) 5442 7897
info@focdsg.org.au |
Fibromyalgia Syndrome - see under 'G' for Glenroy Fibroamyalgia Self-Help Group Organisation
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FOP Support Group (Fibrodysplasia, Myositis Ossificans Progressiva)
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PO Box 587
Cowes
Vic 3922 |
Contact: Damian Jones
jones@waterfront.net.au |
Fragile X Association of Victoria
http://fragilexvic.com.au |
PO Box 7312
Karingal Centre
Frankston Vic 3199 |
Contact:
0421 152 690 (Peer support)
info@fragilexvic.com.au |
Gastrostomy Information and Support Society (GISS)
www.scopevic.org.au/therapy_advisory_giss.html |
PO Box 608
Box Hill
Vic 3128 |
Contacts: Hilary Johnson, Lyn Tatt
(03) 9843-2000
giss.crc@scopevic.org.au
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Gaucher Association of Australia
www.gaucherdisease.com.au |
PO Box 983
Sunbury
Vic 3429 |
Contact: Loraine Mitchell
(03) 9740-7203
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Glenroy Fibroamyalgia Self-Help Group Organisation
|
PO Box 223
Moreland
Vic 3058 |
Contact: Penelope Myers
0422 616 344
glenroyfms.org.au
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Haemophilia Foundation Victoria Inc.
www.haemophiliavic.org.au
*Read our 'Meet our Support Groups' feature on the HFV* |
13 Kieth St Hampton East Vic |
Contact: Pamela or Julia
(03) 9555-7595
hfvic@vicnet.net.au |
HeartKidsVictoria
www.heartkidsvic.org.au |
|
Contact:
(03) 9513 9030 (message bank service)
0419 576 448
heartkids@hearkids.org.au |
Hemihypertrophy - see under 'A' for Aussie Hemi Support Group
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Holoprosencephaly - see under 'A' for Australian Holopresencephaly Support Group
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| Huntington Disease- see under 'A' for Australian Huntington Disease Association Vic |
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Immune Deficiencies Foundation of Australia (IDFA)
www.idfaustralia.org |
PO Box 447
Concord West
NSW 2138 |
Contact:
1800 033 603 (freecall)
support@idfaustralia.org
info@idfaustralia.org |
Jeune Syndrome - see under 'A' for Australian Jeune Syndrome Association
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| Kabuki Syndrome - see under 'S' for Supporting Aussie Kids with Kabuki Syndrome |
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Kabuki Syndrome Network
International support group for Kabuki Syndrome, based in Canada
www.kabukisyndrome.com
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Contact: Stacey (Australian contact)
(03) 5275 1542
dsmckiernan@dodo.com.au |
Klinefelter Syndrome Support Group Australia
see also under 'X' for XXWhy.com: The Australian Support Group for Klinefelter Syndrome
|
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Contact: Kieran or Paul
0419 556 825 / 0419 334 805
kieran215@hotmail.com
pbyrnemoroney@yahoo.com.au |
Learning Difficulties - see under 'S' for SPELD Vic
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| Leukodystrophy - see under 'A' for Australian Leukodystrophy Support Group Inc. (ALDS) |
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| Long QT Syndrome - see under 'S' for Sudden Arrhythmia Death Syndromes (SADS) Foundation Australia |
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Lymphoedema Association of Victoria Inc.
www.lav.org.au |
PO Box 2412
North Ringwood
Vic 3134 |
Contact: Mary D'Elia
1300 852 850
info@lav.org.au |
Marfan Association Victoria Inc.
www.marfanvic.org.au |
PO Box 42
Sunbury
Vic 3429 |
Contact: Sally Ferguson or Justin Nix
03 5784 1357 / 0417 358 549
marfan@bigpond.net.au |
Meniere's Support Group of Vic. Inc. (MSGV)
www.menieres.org.au |
Suite 4
18-28 Skye Rd
Frankston
Vic 3199 |
Contact: Lynn or Michelle
(03) 9783 9233
info@menieres.org.au |
| Mental Illness - see under 'V' for Victorian Mental Illness Awareness Council |
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Metabolic Dietary Disorders Association (MDDA)
www.mdda-australia.org |
PO Box 33 Montrose
Vic 3765 |
Contact:
1800 288 460
mdda@optusnet.com.au |
Moebius Syndrome/Facial Paralysis
http://groups.msn.com/kidswithfacialparalysis |
|
Contact: Karin
kthompson9@bigpond.com |
Motor Neurone Disease Association of Victoria Inc. (MND)
www.mnd.asn.au |
PO Box 23
Canterbury
Vic 3126 |
Contact: Brenda Ryan
(03) 9830 2122
info@mnd.asn.au |
Mucopolysaccharide & Related Diseases Society Aust (MPS)
www.mpssociety.org.au |
PO Box 623
Hornsby
NSW 1630 |
Contact: Wendy Boon
(02) 9476-8411
info@mpssociety.org.au
or contact Victorian Area Representatives
Ingrid - ingrid@mpssociety.org.au
Roslyn - roslyn@mpssociety.org.au |
Muscular Dystrophy Association (MDA)
www.mda.org.au |
111 Boundary Rd, North Melbourne
Vic 3051 |
Contact: Melanie Forsyth
(03) 9320 9555
info@mda.org.au |
Narcolepsy and Overwhelming Daytime Sleep Society of Australia (NODSS)
www.nodss.org.au |
PO Box 100
Rosanna
Vic 3084 |
Contact: Anne Thiele
(03) 9761-9767
info@nodss.org.au |
NIDKIDS Support Group Ltd
(Neuronal Intestinal Dysplasia)
www.nidkids.org.au |
PO Box 30
Lilydale
Vic 3140 |
Contact:
(03) 9727 2997
mail@nidkids.org.au |
Noah's Ark Inc (Parent To Parent Gippsland)
www.noahsarkinc.org.au/ |
PO Box 3163
Gippsland Mail Centre
Vic 3841 |
Contact:
(03) 5135 3131
p2pg@vic.australis.com.au |
OzED - see under 'A' for Australian Ectodermal Dysplasia Support Group above |
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Para/Quad Association of Victoria
www.paraquad.asn.au |
208 Wellington St
Collingwood
Vic 3066 |
Contact:
(03) 9415-1200
theteam@paraquad.asn.au |
Parent Support Network - Eastern Region
www.psn-emr.com.au
'Supporting Parents, Carers and Families who have a child with a disability or special need.' |
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Contact: Rachael Veal
psn-emr@bigpond.net.au |
| Parent Support Program |
PO Box 2547
Regent West
Vic 3072 |
Contact: Thea Calzoni
(03) 9478-5511 |
Parentzone - see under 'A' for Anglicare Parentzone
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Parent / Carer Support
for more information on parent/carer support groups and services please see the Resources for Carers section of our Resources page |
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| Pierre Robin Sequence |
16 Silcocks Hill Rd
Toora
Vic 3962 |
Contact: Debbie Clavarino
(03) 5686-2596 |
Porphyria Association
www.nectarine.com.au/othersites/porphyria/who.htm |
Nerve Centre
54 Railway Road
Blackburn Vic 3130
|
Contact:
porphyria@mssociety.com.au |
Prader-Willi Syndrome Association of Victoria Inc.
www.pws.asn.au |
PO Box 92
Kew
Vic 3101 |
Contact:
info@pws.asn.au |
| Primary Immune Deficiency - see under 'I' for Immune Deficiencies Foundation Australia (IDFA) |
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Psoriasis Association of Victoria Inc.
www.vicnet.net.au/~psoriasis |
PO Box 290
Ashburton
Vic 3147 |
Contact:
(03) 9813 8080
pai@virtual.net.au |
PXE Support Group
(Pseudoxanthoma Elasticum)
|
PO Box 598
Torquay
Vic 3228 |
Contact: Michael Norman
(03) 5261-9049 |
Retina Australia (Vic) Inc.
www.retinaaustralia.com.au |
4th Floor, Ross House
247 - 251 Flinders Lane
Melbourne
Vic 3000 |
Contact: Kate Giles
(03) 9650-5088
ravic@retinaAustralia.com.au |
Rett Syndrome Association of Australia
www.general.uwa.edu.au/u/hleonard/ |
GPO Box 3497
Melbourne
Vic 3001 |
Contact: Bill Callaghan
(03) 9615-7077
rettaust@bigpond.com |
Short Statured People of Australia (SSPA)
www.vic.sspa.asn.au |
2 Mac Cres
Parkdale
Vic 3194 |
Contact: Marilyn Lynch
(03) 9575-7793 |
| Shwachman-Diamond Syndrome - Australia Inc |
9 Jim Rd
Newham
Vic 3442 |
Contact: Joan Buchanan
(03) 5427-0645
buchanan.joan@gmail.com |
SIDSandKIDS Victoria
www.sidsandkids.org/vic |
1227 Malvern Rd
Malvern
Vic 3144 |
Contact:
1800 240 400 or 1300 308 307
melbourne@sidsandkids.org |
Smith Magenis Syndrome Australia (SMS)
www.gsnv.org.au/SMS or http://au.groups.yahoo.com/group/smsaussies/ (mailing list) |
|
Contact: Bernie Benson
0407 920 881 or (02) 6926 1612
benson@dragnet.com.au |
Sotos Support Group
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Contact:
lkwllms@optusnet.com.au |
Spasmodic Torticollis - see under 'A' for Australian Spasmodic Torticollis Assoc. (ASTA)
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SPELD Vic. Inc.
The Specific Learning Difficulties Association of Victoria
www.speldvic.org.au |
494 Brunswick St
North Fitzroy
Vic 3068 |
Contact:
speldvic@bigpond.com.au |
Spina Bifida Foundation of Victoria
www.sbfv.org.au
*Read our 'Meet our Support Groups' feature on the Spina Bifida Foundation of Victoria* |
4th Floor,
Ross House
247-251 Flinders Lane
Melbourne 3000 |
Contact:
(03) 9663 0075
info@sbfv.org.au
|
Spinal Muscular Atrophy Association of Australia
www.smaaustralia.com |
129 Moondarra Drive
Berwick
Vic 3806 |
Contact: Julie
(03) 8768 9193
(03) 8768 9194
admin@smaaustralia.com
See web site for details about online meetings. |
| Sturge-Weber Syndrome - see under 'A' for Australian Sturge-Weber Support Group |
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| Sudden Infant Death Syndrome - see under 'S' for SIDSandKIDS Victoria |
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Sudden Arrhythmia Death Syndromes (SADS) Foundation Australia
www.sads.org.au |
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Contact:
info@sads.org.au |
Support After Fetal Diagnosis of Abnormality (SAFDA) Victoria
www.gsnv.org.au/safda
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c/o Genetic Counselling ServicesRoyal Women's Hospital
132 Grattan Street
Carlton VIC 3053 |
Contact: Genetic counsellors at Royal Women's Hospital
(03) 9344 2121 |
Support Group for Parents Proceeding with an Affected Pregnancy
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Contact: Kitty
(03) 9571 6246 |
Supporting Aussie Kids with Kabuki Syndrome (SAKKS)
www.sakks.org
*Read our 'Meet our Support Groups' feature on SAKKS* |
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Contact: Stacey McKiernan
stacey@sakks.org |
Thalassaemia Society of Victoria (TSV)
www.tsv.org.au
*Read our 'Meet our Support Groups' feature on the TSV* |
Thalassaemia Centre
333 Waverley Rd
Mt. Waverley Vic 3149 |
Contact: Maria Kastoras
1300 300 318 (local call from anywhere in Australia)
info@tsv.org.au
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Thyroid Australia
www.thyroid.org.au |
333 Waverley Rd
Mount Waverley
Vic 3149 |
Contact:
(03) 9888 2588
support@thyroid.org.au |
Tourette Syndrome Association Victoria
www.tsavic.org.au/
*Read our 'Meet our Support Groups' feature on the TSAV* |
The Nerve Centre
54 Railway Rd
Blackburn
Vic 3130 |
Contact:
(03) 9845 2700
tourettes@mssociety.com.au
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| Tuberous Sclerosis - see under 'A' for Australasian Tuberous Sclerosis Society |
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| Turner Syndrome - see under 'V' forVictoria Turner Syndrome Association |
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Turner Syndrome Support Group - Albury/Wodonga Region
www.turnerssyndrome.org.au |
PO Box 1459
Wodonga Vic 3690 |
Contact: Diane King
0412 462 194
Dianne.King1@defence.gov.au |
Trichothiodystrophy Support Network
www.vp-it.com.au/sammyjoe/
*Read our 'Meet our Support Groups' feature on the TTD Support Network* |
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Contact: Maria Liistro
(03) 9305 6182 or 0407 558 151
sammyjo2@bigpond.com.au
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Unique in Australia
(A sub group of Unique)
www.rarechromo.org |
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Contact: Mark or Tanya Files
(03) 9455-2510 or 0402 013 865
takmarj@bigpond.net.au |
Victorian Mental Illness Awareness Council
www.vmiac.com.au |
|
Contact: Isabell Collins
(03) 9387-8317
info@vmiac.com.au |
Victoria Turner Syndrome Association
www.turnerssyndrome.org.au |
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Contact: Karlene Lynch
(03) 9337 4074 |
Williams Syndrome Family Support Group (Vic) Inc
home.vicnet.net.au/~wsfsg |
43 Naroo St
Balwyn
Vic 3103 |
Contact:
ws.vic.aus@gmail.com |
| Wolf-Hirschhorn Syndrome - see under 'A' for Australian Wolf-Hirschhorn Syndrome Support Group (AWHSSG) |
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XXWhy: The Australian Support Group for Klinefelter Syndrome
www.xxwhy.com
Not online? See also under 'K' for Klinefelter Syndrome Support Group Australia
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Contact: James
james@xxwhy.com
http://groups-beta.google.com/group/xxwhy |
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