Support Groups

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141 groups found.

Support Group / Individual Address Contact
4P Aussie Kidz - Helping children with Wolf Hirschhorn Syndrome

Melissa Young
T 03 8502 7745
4paussiekidz@gmail.com
Albinism Fellowship of Australia

T 1300 221 619
membership@albinismaustralia.org
Alpha-1 Association of Australia GPO Box 2100
Brisbane
4001

Jenni Nankervis
jenni.nankervis@alpha1.org.au
Alzheimer's Australia Victoria

T 03 9815 7800
alz@alzvic.asn.au
Androgen Insensitivity Syndrome (AIS) Support Group Australia

aissgaustralia@gmail.com
Angelman Syndrome Association Australia

PO Box 554
Sutherland
2232
Laura Greene
lauravalgreene@gmail.com
Aspergers Victoria The Nerve Centre
54 Railway Rd
Blackburn


T 03 9845 2766
admin@aspergersvic.org.au
Asthma Foundation Victoria 491-495 King Street
MELBOURNE
3003

T 1800 645 130
Atypical Haemolytic Uraemic Syndrome Patient Support Group

Liz Marshall
info@ahusaustralia.org.au
Aussie Hands Foundation Inc. 7-15 White Street
WINDSOR
VIC 3181

Elizabeth Serpell
T 03 9044 2106
info@aussiehands.org
Australia Alopecia Areata Foundation Inc.

PO Box 5029
Frankston South
3199
Chel Campbell
info@aaaf.org.au
Australian Association of Disbaility Practitioners 10 / 369 Royal Parade
Parkville
3052

T 03 8341 4300
F 03 8341 4333
info@dpv.org.au
Australian Cystinosis Support Group

T 0895312135; 0407196685
cystinosis.australia@bigpond.com
Australian Disorders of the Corpus Callosum

Maree Maxfield
info@ausdocc.org.au
Australian Galactosaemia Support Network

agsn@agsn.org.au
Australian Gorlin Syndrome Mutual Support Group

Anna Hickey
annahickey43@gmail.com
Australian Mitochondrial Disease Foundation

T 1300 977 180
info@amdf.org.au
Australian NPC Disease Foundation

Mandy Jacobs
T 0409 573 740
mandy@npcd.org.au
Australian Pompe's Association

Rsaich@bigpond.net.au
Australian Rare Chromosome Awareness Network

info@arcan.org.au
Australian Spasmodic Torticollis Association

Jan
T 03 9723 6651
astavic@optusnet.vic.au
Autism Victoria - Amaze

T 03 9657 1600 or 03 9657 1619 (Family Counsellor) or 1300 308 699
info@amaze.org.au
Bailee Ada Foundation

Melissa Choate
T 0414 846 603
Ballarat Lymphoedema Exercise & Education Support Group Eastwood Leisure Complex
Ballarat
3350

Kay Timmins
T 0417 155 511
Bardet-Biedel Australia

Kathryn
info@bardetbiedlaustralia.org
BrAshA-T Ataxia-Telangiectasia Ltd

Vanessa Scrofani
vanessa@brashat.org.au
CAH Support Group of Australia Inc.

president@cah.org.au
Cancer Council Victoria

T 03 9635 5000
enquiries@cancervic.org.au
Cardiomyopathy Assocation of Australia Ltd

info@cmaa.org.au
Carriers of Balanced Translocations

Charcot-Marie Tooth Association of Australia Inc.

T 02 9767 5105
cmtaa2@cmt.org.au
CHARGE Syndrome Association of Australasia Ltd.

T 02 9605 8475
ken.charge@hotmail.com
Children's Tumour Foundation Suite 2, 451
Lyons Road West
Five Dock
NSW 2046

MCRI, 50 Flemmington Rd
Parkville
VIC 3052
Ms Natalie McLean
T 03 9936 6268 or 02 9713 6111
info@ctf.org.au
Chromosome 18 Registry & Research Society (Aust), The 61 Kuroki St
Penshurst
NSW 2222

Marlene Brightwell
T 02 9580 5707
admin@chromosome18.org.au
Cleft Palate and Lip Society (CleftPals)

Evelyn Culnane
T Support Hotline 0425 784 130; Feeding Equipment Hotline 0425 784 136
Coeliac Society of Victoria

T 03 9808 5566
VicTas@coeliac.org.au
Congenital Diaphragmatic Hernia (CDH) Australia

Danielle Kessner
T 0400 845 681
information@cdh.org.au
Creutzfeldt-Jakob Disease Support Network Group

T 1800 052 466
contactus@cjdsupport.org.au
Cri Du Chat Support Group of Australia

T 03 9775 9962
info@criduchat.asn.au
Crohn's & Colitis Australia

T Freecall 1800 138 029
info@crohnsandcolitis.com.au
Cystic Fibrosis Victoria Inc.

Cindy Van Rooy
T 03 9686 1811
F 9686 3437
admin@cfv.org.au
Dialysis & Transplant Association of Victoria

Ros Ball
info@datavic.org
Down Syndrome Association of Victoria

T Freecall 1300 658 873 or 03 9486 9600
SueO@dsav.asn.au
Dystrophic Epidermolysis Bullosa Research Association of Australia (DEBRAA)

Victorian Representative Simone Baird
T 03 9759 7727
simonebaird@bigpond.com
Ehlers Danlos Syndrome Group Austraila

Epilepsy Foundation of Victoria Inc.

Librarian
T 03 9805 9114
pbrockett@epilepsy.asn.au
Fabry Australia PO Box 106
Mentone
3194

Anne Hunter
secretary@fabry.com.au
Fibrodysplasia Ossificans Progressiva Association

Julie Collins
T 0417714259
julie.collins1@optusnet.com.au
Foundation for Angelman Syndrome Therapeutics (FAST)

T 1300 078 108
info@cureangelman.org.au
Fragile X Alliance Inc.

T 03 9528 1910
reception@travelclinic.com.au
Fragile X Association of Australia Inc

T 1300 394 636 OR 02 9977 0074
support@fragilex.org.au
Friedreich Ataxia Association of Victoria

Jason Coffey
T 0438 464 412
faavic@gmail.com
Friends of Sammy Joe Foundation (Trichothiodystrophy)

Maria
T 0407 558 151
Galactosaemia

Eileen Bywater
T 03 9702 8986
eand2t@hotmail.com
Gastrostomy Information and Support Society (GISS)

giss.crc@scopevic.org.au
Gaucher Association of Australia

PO Box 983
Sunbury
3429
T 03 9740 7203
gaucher.australia@gmail.com
Gelastic Seizure Support Hub Post Office Box 88
Toowoomba
4350

George Helon
ghelon@yahoo.com.au
Glaucoma Australia

PO Box 420
Crows Nest
NSW 1585
T (02) 9906 6640
glaucoma@glaucoma.org.au
Goulburn Valley Support Group for Children with Special Needs

PO Box 794
Shepparton
3632
Nicole O'Brien
T (03) 5831 7157
information@gvsgcsn.com.au
HAE Australasia Ltd PO Box 285
Webb Street
Narre Warren
VIC 3805

T Fiona Wardman (President): 0402 313 636 or Louise Ridout (Vic Representative): 0419 88 33 96
louise@haeaustralasia.org.au
Haemophilia Foundation Australia 7 Dene Ave
Malvern East
3145

T 03 9885 7800
hfaust@haemophilia.org.au
Haemophilia Foundation Victoria Inc.

T 03 9555 7595
info@hfv.org.au
Heartkids Victoria Inc PO Box 803
Parkville
3052

T 03 9329 0446 (Head Office) or 0478 091 773 (Tracey Stanley, Support Coordinator)
heartkids@heartkids.org.au
Hemiconvulsion Hemiplegia Epilepsy Syndrome

Kelly Wilton
kellywilton44@gmail.com
Hereditary Spastic Paraplegia

T 03 9467 3891
johnandtia@hotmail.com
Hills Autism & Special Needs Support Group

Barb Brown
brum-bs-4ever@live.com
Huntington's Victoria

T 1800 063 501
info@huntingtonsvic.org.au
iCare Special Needs Support Group

T 0434 140 620
Immune Deficiencies Foundation Australia (IDFA)

PO Box 969
Penrith
2751
T 1800 100 198 or Mobile: 0409 945 114
christine.jeffery@idfa.org.au
Incontinentia Pigmenti International Foundation (USA)

Juvenile Diabetes Research Foundation (JDRF)

T 03 9696 3866
bbeckerman@jdrf.org.au
Kawasaki Disease Foundation

PO Box 585
Brentford Square
3131
info@kdfoundation.org.au
Klinefelter Support (Australian X and Y Spectrum Support)

Monica Bray
xxyaust@gmail.com
Leadership Plus

admin@leadershipplus.com
Leukodystrophy Australia

T Freecall 1800 141 400
mail@alds.org.au
Limb Kids Support Association Inc.

secretary@limbkids.asn.au; president@limbkids.asn.au
Lowe Syndrome Association (USA)

Lymphoedema Association of Victoria Inc.

info@lav.org.au
Marfan Association Victoria Inc.

T 1300 691 164
info@marfanvic.org.au
Marfan Network Australia

Carla Harris
T 02 6495 1780
marfanaustralia@yahoo.com.au
Melanoma Patients Australia Wesley Research Institute Lvl 8 East Wing 451 Coronation Dve
Auchenflower
QLD 4066

Chris Grace
T 07 3721 1770
info@melanomapatients.org.au
Metabolic and Dietary Disorders Association (MDDA)

T 03 9723 0600
Moreland Fibromyalgia Support Group

Penelope Myers
T 0422 616 344
morelandfmsgrp@optusnet.com.au
Motor Neurone Disease Association of Victoria Inc. 265 Canterbury Rd
CANTERBURY
VIC 3126

PO Box 23
CANTERBURY
VIC 3126
David Kerley
T (03) 9830 2122; 1800 806 632
info@mnd.asn.au
Mowat Wilson Australian Support

Samantha Eise
T 0419 557 802
s_eise@hotmail.com
Mucopolysaccharide and Related Diseases Society Australia Ltd.

PO Box 131
HEIDELBERG
3084
T 1800 045 515
info@mpssociety.org.au
Muscular Dystrophy Australia

Maria Kouppas Client Services Manager
T 03 9320 9555
info@mda.org.au
Narcolepsy and Overwhelming Daytime Sleep Society of Australia Co. Ltd (NODSS)

T 9761 9767
National MPS Society (USA)

info@mpssociety.org
Nel's Place - BRCA Community

Neuromuscular Support Group for Young Adults

T 0402 517 879
info@gsnv.org.au
Nevus Support Australia

michelle@nevussupport.com
Occulodentodigital Syndrome Support Group

Debra Coutts
T 0413 656 758 or 03 9778 3735
stretch73@bigpond.com
Osteogenesis Imperfecta (Brittle Bone) Society of Australia

Victorian Representative Maria Wallace
T 0438 981 333
tm.wallace@optusnet.com.au
Our Faces Support - Crouzon syndrome

Jenny Woolsey
T 07 3881 3073 or 0419 704803
ozED - Australian Ectodermal Dysplasia Support Group

Jenny Boss
T 07 3863 4873
info@ozed.org.au
Pallister-Hall Syndrome Support Hub Post Office Box 88
Toowoomba
QLD 4350

George Helon
ghelon@yahoo.com.au
Pallister-Killian Syndrome Foundation of Australia PO Box 4307
Myaree
6960

info@pks.org.au
Parents and Researchers Interested in Smith-Magenis Syndrome 21800 Town Center Plaza Suite #266A-633 Sterling
VA
20164

Cally Bauman
cbauman@prisms.org
PCD Australia

Janet Bourke
jbourke@nteu.org.au
People with Multiple Sclerosis Victoria Inc

Pierre Robin Australia

T 03 9789 9373
info@pierrerobin.org.au
PNH Support Association of Victoria Inc.

PO Box 472
South Yarra
3141
info@pnhsaa.org.au
Porphyria Association

T (03) 9845 2737
Porphyria@msaustralia.org.au
Prader Willi Syndrome Association of Victoria

Primary Ciliary Dyskinesia (PCD) Australia

Catherine
catherine@pcdaustralia.org.au
Raising Children Awareness Network

Retina Australia Victoria 4th Floor, Ross House
247-251 Flinders lane
Melbourne
3000

Leighton Boyd
T 03 9650 5088
support@retinavic.org.au
Retroperitoneal Fibrosis

coopergt@iprimus.com.au
Rett Syndrome Association of Australia

Bill Callaghan
rettaust@bigpond.com
Rubinstein Taybi Syndrome

Russell Silver Syndrome Australia

Sands (misscarriage, stillborn and newborn death support)

T 03 9787 9685
jshearerk@bigpond.com
Scleroderma Foundation of Vic Inc. St Vincents Hospital
41 Victoria Parade
Fitzroy
3065

Belinda Kovtlang
T 03 9288 3651 (Office hours Tuesdays 10am-3pm)
enq@sclerodermavictoria.com.au
Short Statured People of Australia (SSPA) Victoria

Sam Millard (Chairperson) Meredith Young (Secretary)
samuel.r.millard@gmail.com young.meredith.e@gmail.com
Shwachman-Diamond Syndrome Australia Inc

Joan Buchanan
buchanan.joan@gmail.com
SIDS and Kids

Neil Grun
T 03 8888 1611
neilgrun@sidsandkids.org
SPELD Vic. Inc.

admin@speldvic.org.au
Spina Bifida Foundation Victoria

T (03) 9663 0075
info@sbfv.org.au
Spinal Muscular Atrophy Association Australia

T 03 9545 3633
smaaa@smaaustralia.org.au
Spinocerebellar Ataxia Australia Inc

Marie Dunn
T 0428 589 717
Stickler's Syndrome Down Under

Stiff Person Syndrome Association

Tanya Jarvis
T 0401 450 125
stevtan@tpg.com.au
Support After Fetal Diagnosis of Abnormality

Syndromes Without A Name (SWAN) Australia

Heather Renton
T 0404 280 441
admin@swanaus.com.au
Tarlov Cyst Disease Society of Australia

tarlovcystsocietyaustralia@gmail.com
Thalassaemia Australia Inc 333 Waverley Road
MOUNT WAVERLEY
VIC 3149

333 Waverley Road
MOUNT WAVERLEY
VIC 3149
Ms
T 9888 2211
F 9888 2150
info@thalassaemia.org.au
The Australian Arthrogryposis Group (TAAG) Inc.

The Friends of Sammy-Jo Foundation

Maria Liistro
Tourette Syndrome Association of Victoria

T 9845 2700
Tourette.Syndrome@msaustralia.org.au
Tuberous Sclerosis Australia

Narelle Kerr
T (03) 5593 1287
info@tsa.org.au
Turner Syndrome Association of Australia

PO Box 614
Altona
3018
Anne-Maree George
T 03 9398 1172
Unique – Understanding Chromosome Disorders G1, The Stables
Station Road West, Oxted
Surrey, England


T +44 (0)1883 723356
info@rarechromo.org
UsherKids Australia

Emily Shepard
info@usherkidsaustralia.com
Van Wright Foundation

Collene Wright
VCFS 22q11 Foundation Inc.

Maria Kamper
T 02 6337 9433
president@vcfsfa.org.au
Very Special Kids

T 1800 888 875
mail@vsk.org.au
Victorian Mental Illness Awareness Council (VMIAC)

T (03) 9380 3900
Whirled Foundation Inc. Brockwood House
Suite 4, 424-426 Nepean Highway
FRANKSTON
3199

T 03 9783 9233
F 03 9783 9208
info@whirledfoundation.org
William's Syndrome Family Support Group

ws.vic.aus@gmail.com
Wolf-Hirschhorn Syndrome Support Group, Australian

Olivia Sheen
colinkimandrew@bigpond.com

 

If you have a group you would like to list here, or if details listed are not current, please contact us.

While many of the groups listed are affiliated with the GSNV, we do not necessarily endorse, or even hold, the same opinions as every group on this list.

 

If you have searched our online directory and cannot find a support group, it may be that a group doesn't currently exist that suits your needs. There are still a range of options available to put you in touch with support: