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106 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.au
Alzheimer's Australia Victoria

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

aissgaustralia@gmail.com
Asperger Syndrome Association (ASSN) Victoria Inc. The Nerve Centre
54 Railway Rd
Blackburn


T 03 9845 2766
help@assnvic.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@apsga.org.au
Australia Alopecia Areata Foundation Inc.

PO Box 5029
Frankston South
3199
Chel Campbell
info@aaaf.org.au
Australian Crohn's and Colitis Association (ACCA)

T Freecall 1800 138 029
info@crohnsandcolitis.org.au
Australian Cystinosis Support Group

T 0895312135; 0407196685
cystinosis.australia@bigpond.com
Australian Galactosaemia Support Network

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

Anna Hickey
annahickey43@gmail.com
Australian Leukodystrophy Support Group Inc

T Freecall 1800 141 400
mail@alds.org.au
Australian Mitochondrial Disease Foundation

T 1300 977 180
info@amdf.org.au
Australian Pompe's Association

T 03 5975 9114
brelmar@surf.net.au
Australian Rare Chromosome Awareness Network

Patricia Jonas
T 0402669075
Pjonas@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
melissa@baf.org.au
Ballarat Lymphoedema Exercise & Education Support Group Eastwood Leisure Complex
Ballarat
3350

Kay Timmins
T 0417 155 511
Bardet-Biedel Australia

Kathryn
info@bardetbiedlaustralia.org
CAH Support Group of Australia Inc.

president@cah.org.au
Cardiomyopathy Assocation of Australia Ltd

info@cmaa.org.au
Carriers of Balanced Translocations

CDH Australia

Danielle Kessner
T 0400 845 681
information@cdh.org.au
Charcot-Marie Tooth Association of Australia Inc.

Bob Hayes
T 0419 582 175
CHARGE Syndrome Association of Australasia Ltd.

T 02 9605 8475
ken.charge@hotmail.com
Chromosome 18 Registry & Research Society (Aust), The

T 02 9580 5707
chromosome18@optusnet.com.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
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
Cystic Fibrosis Victoria Inc.

T 03 9686 1811
mlay@cfv.org.au
Down Syndrome Association of Victoria

T Freecall 1300 658 873 or 03 9486 9600
info@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

Bianca Nicholls
T 0417 982 959
Epilepsy Foundation of Victoria Inc.

Librarian
T 03 9805 9114
pbrockett@epilepsy.asn.au
Fabry Support Group Australia Inc.

Megan Fookes
T 0422 201 013
president@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 Victoria

T 1300 394 636 (or 0409 987 012 out of Bus. hours)
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
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
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
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

Tammy Gardner
T 03 9818 6333
info@huntingtonsvic.org.au; t.garner@huntingtonsvic.org.au
iCare Special Needs Support Group

PO BOX 3727
Caroline Springs
VIC 3023
Mrs Angie Scicluna
T 0401 519 365
scicluna7@bigpond.com
Immune Deficiencies Foundation Australia (IDFA)

PO Box 969
Penrith
2751
T 1800 100 198
christine.jeffery@idfaustralia.org; cornflake042@gmail.com (VIC)
Juvenile Diabetes Research Foundation (JDRF)

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

PO Box 585
Brentford Square
3131
info@kdfoundation.org.au
Klinefelter's Support Group of Victoria

PO Box 652
Templestowe
3106
Kieran Sutton-Ryan
T 0419 556 825
kieran512@rocketmail.com
Leadership Plus

admin@leadershipplus.com
Limb Kids Support Association Inc.

secretary@limbkids.asn.au; president@limbkids.asn.au
Marfan Association Victoria Inc.

T 1300 691 164
info@marfanvic.org.au
Meniere's Australia Inc

T 03 9783 9233
info@menieres.org.au
Metabolic and Dietary Disorders Association (MDDA)

T 03 9723 0600
Moreland Fibromyalgia Support Group

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

PO Box 23
CANTERBURY
VIC 3126
T (03) 9830 2122; 1800 806 632
info@mnd.asn.au
Mucopolysaccharide and Related Diseases Society Australia Ltd.

PO Box 623
Hornsby
1630
David Oliver
T (02) 9476 8411
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
info@nodss.org.au
Nevus Support Australia

michelle@nevussupport.com
NF Australia Suite 2, Level 1
84 Victoria Road
DRUMMOYNE
NSW 2047

Ms Dorothy Zammit
T 02 9719 3356
info@nfaa.org.au
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
ozED - Australian Ectodermal Dysplasia Support Group

Jenny Boss
T 07 3863 4873
info@ozed.org.au
PCD Australia

PO BOX 581
Altona
3018
Catherine Kruljac
catherinekruljac@hotmail.com
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

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

Psoriasis Australia Inc.

Helen Bastian
T 03 9813 8080
info@psoriasisaustralia.org.au
Retina Australia Victoria 4th Floor, Ross House
247-251 Flinders lane
Melbourne
3000

Leighton Boyd
T 03 9650 5088
support@retinavic.org.au
Rett Syndrome Association of Australia

Bill Callaghan
rettaust@bigpond.com
RF World Support

coopergt@iprimus.com.au
Rubinstein Taybi Syndrome

info@rubinstein-taybi.org.au
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
bachanan.joan@gmail.com
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 Australia

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
Thalassaemia Australia Inc 333 Waverley Road
MOUNT WAVERLEY
VIC 3149

333 Waverley Road
MOUNT WAVERLEY
VIC 3149
Ms Maria Kastoras
T 9888 2211
F 9888 2150
info@thalassaemia.org.au
The Aussie Hands Foundation Inc.

PO Box 8
Coburg
3058
Elizabeth Serpell
T 03 9354 0324
info@aussiehands.org
The Australian Arthrogryposis Group (TAAG) Inc.

The Australian Tuberous Sclerosis Society

Narelle Kerr
T (03) 5593 1287
relsy75@hotmail.com
The Friends of Sammy-Jo Foundation

Maria Liistro
Tourette Syndrome Association of Victoria

T 9845 2700
Tourette.Syndrome@msaustralia.org.au
Unique - The Rare Chromosome Disorder Support Group PO Box 2189
Caterham Surrey CR3 5GN
England


T +44 (0)1883 330766
F +44 (0)1883 330766
info@rarechromo.org
VCFS 22q11 Foundation Inc.

Maria Kamper
T 02 6337 9433
president@vcfsfa.org.au
Victorian Turners Syndrome Association

Anne-Marie George
T 03 9398 1172
Age19045@bigpond.net.au
William's Syndrome Family Support Group

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

Olivia Sheen
T 0402608488
onesmallchicken@yahoo.com.au

 

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: