Support Groups

Support groups play an integral role in the mental well being of the general community. They can be a shoulder to lean on, a place to get practical advice and somewhere you can talk to others with similar experiences.

If you would like to contact others that may have had similar experiences to you, please search the list below. 

Support Groups Primary

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There are currently 123 names in this directory
22q11.2 Deletion Syndrome
Submitted by: 22q Foundation Australia & New Zealand 
3-Methylcrotonyl CoA Carboxylase Deficiency
1800 288 460; (03) 9723 0600
office@mdda.org.au
mdda.org.au/
Submitted by: Metabolic Dietary Disorders Association
Acquired Brain Injury
(03) 9489 2999
admin@leadershipplus.com
leadershipplus.com
Submitted by: Leadership Plus
Acute Necrotizing Encephalopathy
aneinternationalfamilies@gmail.com
aneinternational.org
Submitted by: Acute Necrotizing Encephalopathy International
Albinism
1300 221 619
membership@albinismaustralia.org
albinismaustralia.org
Submitted by: Albinism Fellowship of Australia
Alopecia Areata
Submitted by: Australia Alopecia Areata Foundation
Alpha-1 Antitrypsin Deficiency
(07) 3103 3363
emailus@alpha1.org.au
alpha1.org.au
Submitted by: Alpha-1 Association of Australia
Androgen Insensitivity Syndrome
aissgaustralia@gmail.com
aissga.org.au
Submitted by: Androgen Insensitivity Syndrome Support Group Australia
Angelman Syndrome
Submitted by: Angelman Syndrome Association Australia
Arthrogryposis
0417 803 573
berriga@bigpond.com
taag.org.au
Submitted by: The Australian Arthrogryposis Group (TAAG)
Aspergers
(03) 9845 2766
admin@aspergersvic.org.au
aspergersvic.org.au
Submitted by: Aspergers Victoria
Asthma
Submitted by: Asthma Australia
Ataxia-telangiectasia
info@brashat.org.au
brashat.org.au
Submitted by: BrAshA-T Ataxia-Telangiectasia
Atypical Haemolytic Uraemic Syndrome
0402 052 411
info@ahusaustralia.org.au
ahusaustralia.org.au
Submitted by: Atypical Haemolytic Uraemic Syndrome Patient Support Group
Autism
(03) 9657 1600
info@amaze.org.au
amaze.org.au
Submitted by: Amaze
Bardet-Biedl syndrome
info@bardetbiedlaustralia.org
bardetbiedlaustralia.org
Submitted by: Bardet-Biedl Australia
Blood Disease
0414 309 995
info@aussicklecelladvocacy.org
aussicklecelladvocacy.org
Submitted by: Australian Sickle Cell Advocacy
Cancer
(03) 9514 6100
enquiries@cancervic.org.au
cancervic.org.au
Submitted by: Cancer Council Victoria
Cancer
1800 640 420
info@leukaemia.org.au
leukaemia.org.au
Submitted by: Leukaemia Foundation
Cardiomyopathy
1300 552 622
info@cmaa.org.au
cmaa.org.au
Submitted by:   Cardiomyopathy Assocation of Australia
Charcot-Marie-Tooth
(02) 9767 5105
cmtaa2@cmt.org.au
cmt.org.au
Submitted by: Charcot-Marie Tooth Association of Australia
CHARGE Syndrome
(07) 3357 1191
admin@chargesyndrome.org.au
chargesyndrome.org.au
Submitted by: CHARGE Syndrome Association of Australasia
Chromosome 18 Conditions
(02) 9580 5707
admin@chromosome18.org.au
chromosome18.org
Submitted by: Chromosome 18 Registry & Research Society (Aust)
Chromosome Disorders
info@arcan.org.au
arcan.org.au
Submitted by: Australian Rare Chromosome Awareness Network
Cleft Palate
0425 784 130 
cleftpalsvic@gmail.com
cleftpalsvic.com
Submitted by: CleftPALS Vic
Cockayne Syndrome
0407 558 151
contact@friendsofsammyjoe.org
friendsofsammyjoe.org
Submitted by: The Friends of Sammy-Jo Foundation
Coeliac Disease
1300 458 836
info@coeliac.org.au
coeliac.org.au
Submitted by: Coeliac Australia
Congenital adrenal hyperplasia
http://www.cah.org.au/contact-us/
cah.org.au
Submitted by: CAH Support Group of Australia
Congenital Diaphragmatic Hernia
1800 149 562
information@cdh.org.au
BROKEN LINK HERE:
cdh.org.au
POSSIBLE ALTERNATE WEBSITE:
CDH Australia’s Page on everydayhero
Submitted by: CDH Australia
Congenital Heart Disease
1800 432 785
office@heartkids.org.au
heartkids.org.au
Submitted by: Heartkids
Congenital Melanocytic Naevus
michelle@nevussupport.com
nevussupport.com
Submitted by: Nevus Support Australia
Creutzfeldt-Jakob Disease
1800 052 466
contactus@cjdsupport.org.au
cjdsupport.org.au
Submitted by: CJD Support Group Network Australia
Cri Du Chat Syndrome
(03) 9775 9962
info@criduchat.asn.au
criduchat.asn.au
Submitted by: Cri Du Chat Support Group of Australia
Cystic Fibrosis
Submitted by: Cystic Fibrosis Australia
Cystinosis
(08) 9531 2135; 0407 196 685
cystinosis.australia@bigpond.com
cystinosis.com.au
Submitted by: Australian Cystinosis Support Group
Dementia
1800 100 500
helpline.nat@dementia.org.au
dementia.org.au
Submitted by: Dementia Australia
Disability
information@gvsgcsn.com.au
Submitted by: Goulburn Valley Support Group for Children with Special Needs
Disorders of the Corpus Callosum
info@ausdocc.org.au
ausdocc.org.au
Submitted by: Australian Disorders of the Corpus Callosum
Down Syndrome
1300 658 873
info@dsav.asn.au
downsyndromevictoria.org.au
Submitted by: Down Syndrome Victoria
Dystonia
info@dystonia.org.au
dystonia.org.au
Submitted by: Dystonia Network of Australia
Ectodermal Dysplasia
info@ozed.org.au; https://www.ozed.org.au/pages/contact-us
ozed.org.au
Submitted by: Australian Ectodermal Dysplasia Support Group (ozED)
Ehlers-Danlos Syndrome
Submitted by: Ehlers Danlos Syndrome Support in Austraila
Epidermolysis Bullosa
admin@debra.org.au
debra.org.au
Submitted by: DEBRA Australia
Epilepsy
1300 761 487
epilepsy@epilepsyfoundation.org.au
epilepsyfoundation.org.au
Submitted by: The Epilepsy Foundation
Fabry Disease
0422 201 013
secretary@fabry.com.au
fabry.com.au
Submitted by: Fabry Australia
Facial differences
0481 328 837
karibuanawim@gmail.com
Submitted by: Karibu Anawim
Fibrodysplasia Ossificans Progressiva
together@ifopa.org
ifopa.org
Submitted by: International Fibrodysplasia Ossificans Progressiva Association
Fibromyalgia
0422 616 344
morelandfmsgrp@optusnet.com.au
Submitted by: Moreland Fibromyalgia Support Group
Fragile X Syndrome
(03) 9528 1910
fragilex.com.au
Submitted by: Fragile X Alliance
Friedreich Ataxia
Submitted by: Friedreich Ataxia Network
Galactosaemia
agsn@agsn.org.au
BROKEN LINK HERE:
agsn.org.au
Submitted by: Australian Galactosaemia Support Network
Gelastic Seizure
ghelon@yahoo.com.au
Submitted by: Gelastic Seizure Support Hub
Genetic Cancer
http://familyties.org.au/contact-us/
familyties.org.au
Submitted by: Family Ties Foundation
Glaucoma
1800 500 880
glaucoma@glaucoma.org.au 
glaucoma.org.au
Submitted by: Glaucoma Australia
Gorlin Syndrome
Submitted by: Australian Gorlin Syndrome Mutual Support Group
Growth disorder
sspaenquiry@gmail.com
sspa.org.au
Submitted by: Short Statured People of Australia (SSPA)
Haemophilia
1800 807 173
hfaust@haemophilia.org.au
haemophilia.org.au
Submitted by: Haemophilia Foundation Australia
Hand differences
(03) 9044 2106
info@aussiehands.org
aussiehands.org
Submitted by: The Aussie Hands Foundation Incorporated
Hemiconvulsion Hemiplegia
Submitted by: Hemiconvulsion Hemiplegia Epilepsy Syndrome
Hereditary Angioedema
info@haeaustralasia.org.au
haeaustralasia.org.au
Submitted by: HAE Australasia
Hereditary Spastic Paraplegia
inquiries@hspersunite.org.au
hspersunite.org.au
Submitted by: HSP Research Foundation
Huntington’s Disease
(03) 9818 6333
info@huntingtonsvic.org.au
huntingtonsvic.org.au
Submitted by: Huntington\’s Victoria
Incontinentia Pigmenti
ipif@ipif.org
ipif.org
Submitted by: Incontinentia Pigmenti International Foundation
Inflammatory Bowel Disease
1800 138 029
info@crohnsandcolitis.com.au
crohnsandcolitis.com.au
Submitted by: Crohn\’s & Colitis Australia
Kawasaki Disease
info@kdfoundation.org.au
kdfoundation.org.au
Submitted by: Kawasaki Disease Foundation
Kennedy’s disease
russellanderson11@yahoo.com.au
Submitted by: Kennedy\’s Disease
Kidney Failure
(03) 9894 0377
info@datavic.org
datavic.org
Submitted by: Dialysis & Transplant Association of Victoria
Kidneys
1800 454 363
careteam@kidney.org.au
kidney.org.au
Submitted by: Kidney Health Australia
Klinefelters Syndrome
0423 050 277
klinefelter.org.au
Submitted by: Klinefelter Syndrome Australia
Leukodystrophy
1800 141 400
info@leuko.org.au
leuko.org.au
Submitted by: Leukodystrophy Australia
Limb Losses
Submitted by: Limbkids Support Association
Lowe Syndrome
Submitted by: Lowe Syndrome Association (USA)
Lymphoedema
0417 155 511
Submitted by: Ballarat Lymphoedema Exercise & Education Support Group
Marfan Syndrome
Submitted by: Marfan Association Victoria
Mayer-Rokitansky-Kuster-Hauser Syndrome
info@sistersforlove.org
sistersforlove.org
Submitted by: The Sisters for Love MRKH Foundation
MECP2 duplication syndrome
Submitted by: Van Wright Foundation
Melanoma
1300 884 450
info@melanomapatients.org.au
melanomapatients.org.au
Submitted by: Melanoma Patients Australia
Meniere’s disease
info@menieres.org.au
menieres.org.au
Submitted by: Meniere’s Australia (MA)
Mitochondrial Disease
1300 977 180
info@amdf.org.au
mito.org.au
Submitted by: The Mito Foundation
Motor Neurone Disease
1800 777 175; (02) 8877 0999
admin@mndnsw.asn.au
mndnsw.asn.au
Submitted by: MND New South Wales
Mowat-Wilson Syndrome
Submitted by: Mowat Wilson Australian Support
Mucopolysaccharidoses
1800 045 515
info@mpssociety.org.au
mpssociety.org.au
Submitted by:   MPS Australia (Mucopolysaccharide and Related Diseases Society Australia)
Multiple Sclerosis
Submitted by: People with Multiple Sclerosis Victoria
Muscular Dystrophy
(03) 9320 9555
info@mda.org.au
mda.org.au
Submitted by: Muscular Dystrophy Australia
Narcolepsy
Submitted by: Narcolepsy and Overwhelming Daytime Sleep Society of Australia (NODSS)
Neurofibromatosis
(02) 9713 6111
info@ctf.org.au
ctf.org.au
Submitted by: Children\’s Tumour Foundation
Neuromuscular Disorders
Submitted by: Neuromuscular Support Group for Young Adults
Niemann-Pick Type C
Submitted by: Australian NPC Disease Foundation
Oculodentodigital Syndrome
0413 656 758 or (03) 9778 3735
stretch73@bigpond.com
Submitted by: Occulodentodigital Syndrome Support Group
Osteogenesis Imperfecta
Submitted by: Osteogenesis Imperfecta Society of Australia
Pallister-Hall Syndrome
ghelon@yahoo.com.au
Submitted by: Pallister-Hall Syndrome Support Hub
Pallister-Killian Syndrome
Submitted by: Pallister-Killian Syndrome Foundation of Australia
Paroxysmal Nocturnal Haemoglobinuria
0432 321 207
info@pnhsaa.org.au
pnhsaa.org.au
Submitted by: PNH Support Association of Australia
Pierre Robin Sequence
0400 766 034
info@pierrerobin.org.au
pierrerobin.org.au
Submitted by: Pierre Robin Australia
Pompe Disease
Submitted by: Australian Pompe Association 
Porphyria
Submitted by: Porphyria Association (Australia)
Prader-Willi Syndrome
0451 797 284
info@pws.asn.au
pws.asn.au
Submitted by: Prader-Willi Syndrome Association of Victoria
Primary & Secondary Immune Deficiencies
1800 100 198
info@idfa.org.au
idfa.org.au
Submitted by: Immune Deficiencies Foundation Australia
Primary Ciliary Dyskinesia
Submitted by: Primary Ciliary Dyskinesia (PCD) Australia
Rare Disease
0497 003 104
info@rarevoices.com.au
rarevoices.org.au
Submitted by: Rare Voices Australia
Retinitis Pigmentosa
(03) 9650 5088
support@retinavic.org.au 
retinavic.org.au
Submitted by:   Retina Australia Victoria
Retroperitoneal Fibrosis
Submitted by: Retroperitoneal Fibrosis World Support
Rett Syndrome
0418 561 796
rettaust@bigpond.com
rettaustralia.com
Submitted by: Rett Syndrome Association of Australia
Scleroderma
enq@sclerodermavictoria.com.au
sclerodermavictoria.com.au
Submitted by: Scleroderma Victoria
Shwachman-Diamond Syndrome
buchanan.joan@gmail.com (Joan Buchanan)
Submitted by: Shwachman-Diamond Syndrome Australia Inc
Sickle Cell Anaemia
(03) 9888 2211; (03) 9888 2150
info@tasca.org.au
tasca.org.au
Submitted by: Thalassaemia and Sickle Cell Australia
Smith-Magenis Syndrome
Submitted by: Parents and Researchers Interested in Smith-Magenis Syndrome
Sotos Syndrome
info@sotos.org.au
sotos.org.au
Submitted by: Sotos Syndrome Association of Australasia
Spina Bifida
Submitted by: Spina Bifida Foundation Victoria
Spinal Muscular Atrophy
(03) 9796 5744
reception@smaaustralia.org.au (Jo Harlow)
smaaustralia.org.au
Submitted by: Spinal Muscular Atrophy Australia
Spinocerebellar Ataxia
Marie Dunn (Secretary) mdunn6418@gmail.com; Roger Thompson (President) rogert38@bigpond.com
scars.org.au
Submitted by: Spinocerebellar Ataxia Australia
Tarlov Cyst Disease
tarlovcystsocietyaustralia@gmail.com
tarlovcystsocietyanz.com
Submitted by: Tarlov Cyst Disease Society of Australia & New Zealand
Tourette Syndrome
(02) 9382 3726
info@tourette.org.au
tourette.org.au
Submitted by: Tourette Syndrome Association of Australia Inc
Triple X Syndrome
0404 496 902
amandamiller@iprimus.com.au
Submitted by: Triple X / Trisomy X Support Group Australia
Tuberous Sclerosis
1300 733 435
info@tsa.org.au
tsa.org.au
Submitted by: Tuberous Sclerosis Australia
Turner Syndrome
(07) 3298 6635 (Korina Kenny – National Secretary)
03 9398 1172 (Anne-Maree George – Victorian Branch President)
Contact the Turner Syndrome Association of Australia
turnersyndrome.org.au
Submitted by: Turner Syndrome Association of Australia
Type 1 Diabetes
Submitted by: Juvenile Diabetes Research Foundation (JDRF)
Undiagnosed, Rare Disease, Syndromes Without a Name
0404 280 441
info@swanaus.org.au
swanaus.org.au
Submitted by: Syndromes Without A Name (SWAN) Australia
Usher Syndrome
info@usherkidsaustralia.com
usherkidsaustralia.com
Submitted by: UsherKids Australia
Vision loss
(03) 9650 5088
info@retinaaustralia.com.au 
retinaaustralia.com.au
Submitted by: Retina Australia Victoria
Williams Syndrome
(08) 7329 5409; 0424 787 966
wsaofsa@adam.com.au
wsasa.org.au
Submitted by: Williams Syndrome Association of South Australia
Wolf Hirschhorn Syndrome
(03) 8502 7745
4paussiekidz@gmail.com 
4paussiekidz.org.au
Submitted by: 4P Aussie Kidz
X & Y chromosome variation
0412 038 142
contact@axys.org.au
axys.org.au
Submitted by: Australian X & Y Spectrum Support (AXYS) 

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