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
There are currently 126 names in this directory
22q11.2 Deletion SyndromeSubmitted by: 22q Foundation Australia & New Zealand 3-Methylcrotonyl CoA Carboxylase DeficiencySubmitted by: Metabolic Dietary Disorders Association Acquired Brain InjurySubmitted by: Leadership Plus Acute Necrotizing EncephalopathySubmitted by: Acute Necrotizing Encephalopathy International AlbinismSubmitted by: Albinism Fellowship of Australia Alopecia AreataSubmitted by: Australia Alopecia Areata Foundation Alpha-1 Antitrypsin DeficiencySubmitted by: Alpha-1 Association of Australia Androgen Insensitivity SyndromeSubmitted by: Androgen Insensitivity Syndrome Support Group Australia Angelman SyndromeSubmitted by: Angelman Syndrome Association Australia ArthrogryposisSubmitted by: The Australian Arthrogryposis Group (TAAG) AspergersSubmitted by: Aspergers Victoria AsthmaSubmitted by: Asthma Australia Ataxia-telangiectasiaSubmitted by: BrAshA-T Ataxia-Telangiectasia Atypical Haemolytic Uraemic SyndromeSubmitted by: Atypical Haemolytic Uraemic Syndrome Patient Support Group AutismSubmitted by: Amaze Bardet-Biedl syndromeSubmitted by: Bardet-Biedl Australia Blood DiseaseSubmitted by: Australian Sickle Cell Advocacy CancerSubmitted by: Cancer Council Victoria CancerSubmitted by: Leukaemia Foundation CardiomyopathySubmitted by: Cardiomyopathy Assocation of Australia Charcot-Marie-ToothSubmitted by: Charcot-Marie Tooth Association of Australia CHARGE SyndromeSubmitted by: CHARGE Syndrome Association of Australasia Chromosome 18 ConditionsSubmitted by: Chromosome 18 Registry & Research Society (Aust) Chromosome DisordersSubmitted by: Australian Rare Chromosome Awareness Network Cleft PalateSubmitted by: CleftPALS Vic Cockayne SyndromeSubmitted by: The Friends of Sammy-Jo Foundation Coeliac DiseaseSubmitted by: Coeliac Australia Congenital adrenal hyperplasiaSubmitted by: CAH Support Group of Australia Congenital Diaphragmatic HerniaSubmitted by: CDH Australia Congenital Heart DiseaseSubmitted by: Heartkids Congenital Melanocytic NaevusSubmitted by: Nevus Support Australia Creutzfeldt-Jakob DiseaseSubmitted by: CJD Support Group Network Australia Cri Du Chat SyndromeSubmitted by: Cri Du Chat Support Group of Australia Cystic FibrosisSubmitted by: Cystic Fibrosis Australia CystinosisSubmitted by: Australian Cystinosis Support Group DementiaSubmitted by: Dementia Australia Disabilityinformation@gvsgcsn.com.au
Submitted by: Goulburn Valley Support Group for Children with Special Needs Disorders of the Corpus CallosumSubmitted by: Australian Disorders of the Corpus Callosum Down SyndromeSubmitted by: Down Syndrome Victoria DystoniaSubmitted 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 SyndromeSubmitted by: Ehlers Danlos Syndrome Support in Austraila Epidermolysis BullosaSubmitted by: DEBRA Australia EpilepsySubmitted by: The Epilepsy Foundation Fabry DiseaseSubmitted by: Fabry Australia Facial differences 0481 328 837
karibuanawim@gmail.com
Submitted by: Karibu Anawim Fanconi AnaemiaSubmitted by: Fanconia Anaemia Support Australasia Fibrodysplasia Ossificans ProgressivaSubmitted by: International Fibrodysplasia Ossificans Progressiva Association Fibromyalgia0422 616 344
morelandfmsgrp@optusnet.com.au
Submitted by: Moreland Fibromyalgia Support Group Fragile X SyndromeSubmitted by: Fragile X Alliance Friedreich AtaxiaSubmitted by: Friedreich Ataxia Network GalactosaemiaSubmitted by: Australian Galactosaemia Support Network Gelastic Seizureghelon@yahoo.com.au
Submitted by: Gelastic Seizure Support Hub Genetic CancerSubmitted by: Family Ties Foundation GlaucomaSubmitted by: Glaucoma Australia Gorlin SyndromeSubmitted by: Australian Gorlin Syndrome Mutual Support Group Growth disorderSubmitted by: Short Statured People of Australia (SSPA) HaemophiliaSubmitted by: Haemophilia Foundation Australia Hand differencesSubmitted by: The Aussie Hands Foundation Incorporated Hemiconvulsion HemiplegiaSubmitted by: Hemiconvulsion Hemiplegia Epilepsy Syndrome Hereditary AngioedemaSubmitted by: HAE Australasia Hereditary Spastic ParaplegiaSubmitted by: HSP Research Foundation Huntington’s DiseaseSubmitted by: Huntington\’s Victoria Incontinentia PigmentiSubmitted by: Incontinentia Pigmenti International Foundation Inflammatory Bowel DiseaseSubmitted by: Crohn\’s & Colitis Australia Kawasaki DiseaseSubmitted by: Kawasaki Disease Foundation Kennedy’s diseaserussellanderson11@yahoo.com.au
Submitted by: Kennedy\’s Disease Kidney FailureSubmitted by: Dialysis & Transplant Association of Victoria KidneysSubmitted by: Kidney Health Australia Klinefelters SyndromeSubmitted by: Klinefelter Syndrome Australia LeukodystrophySubmitted by: Leukodystrophy Australia Limb LossesSubmitted by: Limbkids Support Association Lowe SyndromeSubmitted by: Lowe Syndrome Association (USA) Lymphoedema0417 155 511
Submitted by: Ballarat Lymphoedema Exercise & Education Support Group Marfan SyndromeSubmitted by: Marfan Association Victoria Mayer-Rokitansky-Kuster-Hauser SyndromeSubmitted by: The Sisters for Love MRKH Foundation MECP2 duplication syndromeSubmitted by: Van Wright Foundation MelanomaSubmitted by: Melanoma Patients Australia Meniere’s diseaseSubmitted by: Meniere’s Australia (MA) Mitochondrial Disease Submitted by: The Mito Foundation Motor Neurone DiseaseSubmitted by: MND New South Wales Mowat-Wilson SyndromeSubmitted by: Mowat Wilson Australian Support MucopolysaccharidosesSubmitted by: MPS Australia (Mucopolysaccharide and Related Diseases Society Australia) Multiple SclerosisSubmitted by: People with Multiple Sclerosis Victoria Muscular DystrophySubmitted by: Muscular Dystrophy Australia NarcolepsySubmitted by: Narcolepsy and Overwhelming Daytime Sleep Society of Australia (NODSS) NeurofibromatosisSubmitted by: Children\’s Tumour Foundation Neuromuscular DisordersSubmitted by: Neuromuscular Support Group for Young Adults Niemann-Pick Type CSubmitted by: Australian NPC Disease Foundation Oculodentodigital Syndrome0413 656 758 or (03) 9778 3735
stretch73@bigpond.com
Submitted by: Occulodentodigital Syndrome Support Group Osteogenesis ImperfectaSubmitted by: Osteogenesis Imperfecta Society of Australia Pallister-Hall Syndromeghelon@yahoo.com.au
Submitted by: Pallister-Hall Syndrome Support Hub Pallister-Killian SyndromeSubmitted by: Pallister-Killian Syndrome Foundation of Australia Paroxysmal Nocturnal HaemoglobinuriaSubmitted by: PNH Support Association of Australia Pierre Robin SequenceSubmitted by: Pierre Robin Australia Pompe DiseaseSubmitted by: Australian Pompe Association PorphyriaSubmitted by: Porphyria Association (Australia) Prader-Willi SyndromeSubmitted by: Prader-Willi Syndrome Association of Victoria Primary & Secondary Immune DeficienciesSubmitted by: Immune Deficiencies Foundation Australia Primary Ciliary DyskinesiaSubmitted by: Primary Ciliary Dyskinesia (PCD) Australia Rare Disease Submitted by: Rare Voices Australia Retinitis PigmentosaSubmitted by: Retina Australia Retroperitoneal FibrosisSubmitted by: Retroperitoneal Fibrosis World Support Rett SyndromeSubmitted by: Rett Syndrome Association of Australia SclerodermaSubmitted by: Scleroderma Victoria Short StatureSubmitted by: Short Statured People of Australia (SSPA) Shwachman-Diamond Syndromebuchanan.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 SyndromeSubmitted by: Parents and Researchers Interested in Smith-Magenis Syndrome Sotos Syndrome Submitted by: Sotos Syndrome Association of Australasia Spina BifidaSubmitted by: Spina Bifida Foundation Victoria Spinal Muscular AtrophySubmitted by: Spinal Muscular Atrophy Australia Spinocerebellar AtaxiaMarie Dunn (Secretary) mdunn6418@gmail.com; Roger Thompson (President) rogert38@bigpond.com
scars.org.au Submitted by: Spinocerebellar Ataxia Australia Tarlov Cyst DiseaseSubmitted by: Tarlov Cyst Disease Society of Australia & New Zealand Tourette SyndromeSubmitted by: Tourette Syndrome Association of Australia Inc Triple X Syndrome0404 496 902
amandamiller@iprimus.com.au
Submitted by: Triple X / Trisomy X Support Group Australia Tuberous SclerosisSubmitted by: Tuberous Sclerosis Australia Turner SyndromeSubmitted by: Turner Syndrome Association of Australia Type 1 DiabetesSubmitted by: Juvenile Diabetes Research Foundation (JDRF) Undiagnosed, Rare Disease, Syndromes Without a NameSubmitted by: Syndromes Without A Name (SWAN) Australia Usher SyndromeSubmitted by: UsherKids Australia Vision lossSubmitted 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 SyndromeSubmitted by: 4P Aussie Kidz X & Y chromosome variation Submitted by: Australian X & Y Spectrum Support (AXYS)