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 126 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
Submitted by: Metabolic Dietary Disorders Association
Acquired Brain Injury
(03) 9489 2999
Submitted by: Leadership Plus
Acute Necrotizing Encephalopathy
Submitted by: Acute Necrotizing Encephalopathy International
1300 221 619
Submitted by: Albinism Fellowship of Australia
Alopecia Areata
Submitted by: Australia Alopecia Areata Foundation
Alpha-1 Antitrypsin Deficiency
(07) 3103 3363
Submitted by: Alpha-1 Association of Australia
Androgen Insensitivity Syndrome
Submitted by: Androgen Insensitivity Syndrome Support Group Australia
Angelman Syndrome
Submitted by: Angelman Syndrome Association Australia
0417 803 573
Submitted by: The Australian Arthrogryposis Group (TAAG)
(03) 9845 2766
Submitted by: Aspergers Victoria
Submitted by: Asthma Australia
Submitted by: BrAshA-T Ataxia-Telangiectasia
Atypical Haemolytic Uraemic Syndrome
0402 052 411
Submitted by: Atypical Haemolytic Uraemic Syndrome Patient Support Group
(03) 9657 1600
Submitted by: Amaze
Bardet-Biedl syndrome
Submitted by: Bardet-Biedl Australia
Blood Disease
0414 309 995
Submitted by: Australian Sickle Cell Advocacy
(03) 9514 6100
Submitted by: Cancer Council Victoria
1800 640 420
Submitted by: Leukaemia Foundation
1300 552 622
Submitted by:   Cardiomyopathy Assocation of Australia
(02) 9767 5105
Submitted by: Charcot-Marie Tooth Association of Australia
CHARGE Syndrome
(07) 3357 1191
Submitted by: CHARGE Syndrome Association of Australasia
Chromosome 18 Conditions
(02) 9580 5707
Submitted by: Chromosome 18 Registry & Research Society (Aust)
Chromosome Disorders
Submitted by: Australian Rare Chromosome Awareness Network
Cleft Palate
0425 784 130
Submitted by: CleftPALS Vic
Cockayne Syndrome
0407 558 151
Submitted by: The Friends of Sammy-Jo Foundation
Coeliac Disease
1300 458 836
Submitted by: Coeliac Australia
Congenital adrenal hyperplasia
Submitted by: CAH Support Group of Australia
Congenital Diaphragmatic Hernia
1800 149 562
CDH Australia’s Page on everydayhero
Submitted by: CDH Australia
Congenital Heart Disease
1800 432 785
Submitted by: Heartkids
Congenital Melanocytic Naevus
Submitted by: Nevus Support Australia
Creutzfeldt-Jakob Disease
1800 052 466
Submitted by: CJD Support Group Network Australia
Cri Du Chat Syndrome
(03) 9775 9962
Submitted by: Cri Du Chat Support Group of Australia
Cystic Fibrosis
Submitted by: Cystic Fibrosis Australia
(08) 9531 2135; 0407 196 685
Submitted by: Australian Cystinosis Support Group
1800 100 500
Submitted by: Dementia Australia
Submitted by: Goulburn Valley Support Group for Children with Special Needs
Disorders of the Corpus Callosum
Submitted by: Australian Disorders of the Corpus Callosum
Down Syndrome
1300 658 873
Submitted by: Down Syndrome Victoria
Submitted by: Dystonia Network of Australia
Ectodermal Dysplasia;
Submitted by: Australian Ectodermal Dysplasia Support Group (ozED)
Ehlers-Danlos Syndrome
Submitted by: Ehlers Danlos Syndrome Support in Austraila
Epidermolysis Bullosa
Submitted by: DEBRA Australia
1300 761 487
Submitted by: The Epilepsy Foundation
Fabry Disease
0422 201 013
Submitted by: Fabry Australia
Facial differences
0481 328 837
Submitted by: Karibu Anawim
Fanconi Anaemia
(02) 9716 5939
Submitted by: Fanconia Anaemia Support Australasia
Fibrodysplasia Ossificans Progressiva
Submitted by: International Fibrodysplasia Ossificans Progressiva Association
0422 616 344
Submitted by: Moreland Fibromyalgia Support Group
Fragile X Syndrome
(03) 9528 1910
Submitted by: Fragile X Alliance
Friedreich Ataxia
Submitted by: Friedreich Ataxia Network
Submitted by: Australian Galactosaemia Support Network
Gelastic Seizure
Submitted by: Gelastic Seizure Support Hub
Genetic Cancer
Submitted by: Family Ties Foundation
1800 500 880
Submitted by: Glaucoma Australia
Gorlin Syndrome
Submitted by: Australian Gorlin Syndrome Mutual Support Group
Growth disorder
Submitted by: Short Statured People of Australia (SSPA)
1800 807 173
Submitted by: Haemophilia Foundation Australia
Hand differences
(03) 9044 2106
Submitted by: The Aussie Hands Foundation Incorporated
Hemiconvulsion Hemiplegia
Submitted by: Hemiconvulsion Hemiplegia Epilepsy Syndrome
Hereditary Angioedema
Submitted by: HAE Australasia
Hereditary Spastic Paraplegia
Submitted by: HSP Research Foundation
Huntington’s Disease
(03) 9818 6333
Submitted by: Huntington\’s Victoria
Incontinentia Pigmenti
Submitted by: Incontinentia Pigmenti International Foundation
Inflammatory Bowel Disease
1800 138 029
Submitted by: Crohn\’s & Colitis Australia
Kawasaki Disease
Submitted by: Kawasaki Disease Foundation
Kennedy’s disease
Submitted by: Kennedy\’s Disease
Kidney Failure
(03) 9894 0377
Submitted by: Dialysis & Transplant Association of Victoria
1800 454 363
Submitted by: Kidney Health Australia
Klinefelters Syndrome
0423 050 277
Submitted by: Klinefelter Syndrome Australia
1800 141 400
Submitted by: Leukodystrophy Australia
Limb Losses
Submitted by: Limbkids Support Association
Lowe Syndrome
Submitted by: Lowe Syndrome Association (USA)
0417 155 511
Submitted by: Ballarat Lymphoedema Exercise & Education Support Group
Marfan Syndrome
Submitted by: Marfan Association Victoria
Mayer-Rokitansky-Kuster-Hauser Syndrome
Submitted by: The Sisters for Love MRKH Foundation
MECP2 duplication syndrome
Submitted by: Van Wright Foundation
1300 884 450
Submitted by: Melanoma Patients Australia
Meniere’s disease
Submitted by: Meniere’s Australia (MA)
Mitochondrial Disease
1300 977 180
Submitted by: The Mito Foundation
Motor Neurone Disease
1800 777 175; (02) 8877 0999
Submitted by: MND New South Wales
Mowat-Wilson Syndrome
Submitted by: Mowat Wilson Australian Support
1800 045 515
Submitted by:   MPS Australia (Mucopolysaccharide and Related Diseases Society Australia)
Multiple Sclerosis
Submitted by: People with Multiple Sclerosis Victoria
Muscular Dystrophy
(03) 9320 9555
Submitted by: Muscular Dystrophy Australia
Submitted by: Narcolepsy and Overwhelming Daytime Sleep Society of Australia (NODSS)
(02) 9713 6111
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
Submitted by: Occulodentodigital Syndrome Support Group
Osteogenesis Imperfecta
Submitted by: Osteogenesis Imperfecta Society of Australia
Pallister-Hall Syndrome
Submitted by: Pallister-Hall Syndrome Support Hub
Pallister-Killian Syndrome
Submitted by: Pallister-Killian Syndrome Foundation of Australia
Paroxysmal Nocturnal Haemoglobinuria
0432 321 207
Submitted by: PNH Support Association of Australia
Pierre Robin Sequence
0400 766 034
Submitted by: Pierre Robin Australia
Pompe Disease
Submitted by: Australian Pompe Association 
Submitted by: Porphyria Association (Australia)
Prader-Willi Syndrome
0451 797 284
Submitted by: Prader-Willi Syndrome Association of Victoria
Primary & Secondary Immune Deficiencies
1800 100 198
Submitted by: Immune Deficiencies Foundation Australia
Primary Ciliary Dyskinesia
Submitted by: Primary Ciliary Dyskinesia (PCD) Australia
Rare Disease
0497 003 104
Submitted by: Rare Voices Australia
Retinitis Pigmentosa
(03) 9650 5088
Submitted by:   Retina Australia
Retroperitoneal Fibrosis
Submitted by: Retroperitoneal Fibrosis World Support
Rett Syndrome
0418 561 796
Submitted by: Rett Syndrome Association of Australia
Submitted by: Scleroderma Victoria
Short Stature
Submitted by: Short Statured People of Australia (SSPA)
Shwachman-Diamond Syndrome (Joan Buchanan)
Submitted by: Shwachman-Diamond Syndrome Australia Inc
Sickle Cell Anaemia
(03) 9888 2211; (03) 9888 2150
Submitted by: Thalassaemia and Sickle Cell Australia
Smith-Magenis Syndrome
Submitted by: Parents and Researchers Interested in Smith-Magenis Syndrome
Sotos Syndrome
Submitted by: Sotos Syndrome Association of Australasia
Spina Bifida
Submitted by: Spina Bifida Foundation Victoria
Spinal Muscular Atrophy
(03) 9796 5744 (Jo Harlow)
Submitted by: Spinal Muscular Atrophy Australia
Spinocerebellar Ataxia
Marie Dunn (Secretary); Roger Thompson (President)
Submitted by: Spinocerebellar Ataxia Australia
Tarlov Cyst Disease
Submitted by: Tarlov Cyst Disease Society of Australia & New Zealand
Tourette Syndrome
(02) 9382 3726
Submitted by: Tourette Syndrome Association of Australia Inc
Triple X Syndrome
0404 496 902
Submitted by: Triple X / Trisomy X Support Group Australia
Tuberous Sclerosis
1300 733 435
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
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
Submitted by: Syndromes Without A Name (SWAN) Australia
Usher Syndrome
Submitted by: UsherKids Australia
Vision loss
(03) 9650 5088
Submitted by: Retina Australia Victoria
Williams Syndrome
(08) 7329 5409; 0424 787 966
Submitted by: Williams Syndrome Association of South Australia
Wolf Hirschhorn Syndrome
(03) 8502 7745
Submitted by: 4P Aussie Kidz
X & Y chromosome variation
0412 038 142
Submitted by: Australian X & Y Spectrum Support (AXYS) 

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