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

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