| Support Group / Individual |
Address |
Contact |
|
4P Aussie Kidz - Helping children with Wolf Hirschhorn Syndrome
|
|
Melissa Young
T 03 8502 7745
4paussiekidz@gmail.com
|
|
Acute Necrotizing Encephalopathy International
|
|
Kim Smith
aneinternationalfamilies@gmail.com
|
|
Albinism Fellowship of Australia
|
|
T 1300 221 619
membership@albinismaustralia.org
|
|
Alpha-1 Association of Australia
|
|
T Jenni Nankervis T 0407 334 107 jenni.nankervis@alpha1.org.au or Steven Knowles T 0410 108 104 steven.knowles@alpha1.org.au
|
|
Alzheimer's Australia Victoria
|
|
T 1800 100 500
alz@alzvic.asn.au
|
|
Androgen Insensitivity Syndrome (AIS) Support Group Australia
|
PO Box 103
Coorparoo
QLD 4151
PO Box 103
Coorparoo
QLD 4151
|
aissgaustralia@gmail.com
|
|
Angelman Syndrome Association Australia
|
50 Domain Sreet
South Yarra
VIC 3141
50 Domain Sreet
South Yarra
VIC 3141
|
Laura Greene
T 0398674052
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 278 462
|
|
Atypical Haemolytic Uraemic Syndrome Patient Support Group
|
|
Liz Marshall
info@ahusaustralia.org.au
|
|
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
|
8 Follet Rd
Cheltenham
3192
|
Catherine Jenner
cjenner74@optusnet.com.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
|
24 Drummond Street
Carlton
3053
|
T 03 9657 1600 or 03 9657 1619 (Family Counsellor) or 1300 308 699
info@amaze.org.au
|
|
AXYS Australia
|
|
Contact@axys.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
|
|
Mr Mike Clahsen
Mike@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
roblast@iinet.net.au
|
|
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
|
|
Courtney Vodopic
T 1800 149 562
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
PO Box 106
Mentone
3194
|
Anne Hunter
secretary@fabry.com.au
|
|
Family Ties Foundation
|
|
http://familyties.org.au/about-us/
|
|
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 02 9907 2366
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
|
|
Genetic Alliance
|
level 6, 384 Victoria Street
Darlinghurst
NSW 2010
level 6, 384 Victoria Street
Darlinghurst
NSW 2010
|
info@geneticalliance.org.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
|
|
Karibu Anawim - Facial differences support
|
|
Zali O'Dea
karibuanawim@gmail.com
|
|
Kawasaki Disease Foundation
|
PO Box 585
Brentford Square
3131
|
info@kdfoundation.org.au
|
|
Kennedy's Disease
|
|
Mr Russell Anderson
russellanderson11@yahoo.com.au
|
|
Klinefelters syndrome - Chromosome Structure XY & Variations
|
|
Emily Wadsworth
T 0423 050 277
info@csvxy.com.au
|
|
Leadership Plus
|
|
admin@leadershipplus.com
|
|
Leukodystrophy Australia
|
|
T Freecall 1800 141 400
info@leuko.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)
|
|
Elizabeth Hickey
T 9432 0991
|
|
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 Australia
|
|
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
|
|
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 Kruljac
T 0417088097
catherine@pcdaustralia.org.au
|
|
Raising Children Awareness Network
|
|
|
|
Red Nose
|
|
Neil Grun
T 03 8888 1611
neilgrun@sidsandkids.org
|
|
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
|
|
Smith-Magenis Syndrome Australia
|
|
Cally Bauman
info@smsaustralia.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
|
PO Box 390
Fairfield
3078
|
Heather Renton
T 0404 280 441
info@swanaus.org.au
|
|
Tarlov Cyst Disease Society of Australia
|
|
tarlovcystsocietyaustralia@gmail.com
|
|
Thalassaemia and Sickle Cell Australia
|
|
T 9888 2211
info@tasca.org.au
|
|
The Aussie Hands Foundation Incorporated
|
247-251 Flinders Lane
Melbourne
VIC 3000
247-251 Flinders Lane
Melbourne
VIC 3000
|
Elizabeth Serpell
T 0390662104
info@aussiehands.org
|
|
The Australian Arthrogryposis Group (TAAG) Inc.
|
|
|
|
The Friends of Sammy-Jo Foundation
|
|
Maria Liistro
T 0407 558151
marialiistro1711@bigpond.com.au
|
|
The Sisters for Love MRKH Foundation
|
|
Alison Hensley
T 0410937343
|
|
Tourette Syndrome Association of Australia Inc
|
|
T 0293823726
info@tourette.org.au
|
|
Tourette Syndrome Association of Victoria
|
|
T 9845 2700
Tourette.Syndrome@msaustralia.org.au
|
|
Trisomy X / Triple X Syndrome Australian Support Group
|
|
Amanda Miller
T 0404 496 902
amandamiller@iprimus.com.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
|
38 Kershaw Street
Mordialloc
VIC 3195
38 Kershaw Street
Mordialloc
VIC 3195
|
Emily Shepard
T 0414743074
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
|
50 Eliza Street
Black Rock
3193
|
info@wsfsgvic.org.au
|
|
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.
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: