Online Orders
Genetic Support Groups
FIND SUPPORT
Support Groups can provide affected individuals and families with information about the condition and community resources, as well as an understanding and empathic ear. There are hundreds of genetic conditions represented by support groups in Australasia and internationally.
The support group list established on the Centre's website has been determined, based on the information (regarding specific conditions) requested from us over the past five years and those that have been published in The Australasian Genetics Resource Book (8th ed. 2007).
If you cannot find a support group relevant to your enquiry the Genetic Alliance Australia (formerly known as Association of Genetic Support of Australasia) is a not for profit organisation that can also help. Genetic Alliance Australia have a registry of contacts and will ensure that you have someone to talk to or a place to go to make your journey a little easier.
It is the Centre's policy to review the support group list annually and consider new support groups to be listed. If you would like to put forward a support group for inclusion or you see something that needs to be updated in the Centre's website list, please contact the Centre .
ALPHABETICAL LISTING
OUTSIDE NSW/AUSTRALIA
There are other genetic support organisations in some Australian states. They are supported by the Genetic and Rare Disease Network and are listed below:
Genetic and Rare Disease Network (GaRDN) - Western Australia
Genetic Support Network Victoria (GSNV)
New Zealand Organisation for Rare Disorders (NZORD)
|
A |
|
|---|---|
|
Genetic Condition |
Support Group |
| Achondroplasia |
Short Statured People of Australia Inc |
| Acoustic Neuroma |
Acoustic Neuroma Association of Australasia |
| Adrenoleukodystrophy |
Leukodystrophy Australia |
| Alpha 1 antitrypsin deficiency |
Alpha-1 Association of Australia |
|
Thalassaemia Society of NSW |
|
| Alport syndrome |
Alport Foundation of Australia |
| Alzheimer disease |
Dementia Australia |
| Amyotrophic lacteral sclerosis |
Motor Neurone Disease Association |
| Androgen insensitivity syndrome | Androgen Insensitivity Syndrome Support Group Australia Inc Ph: (03) 9315 8809 W: http://www.aissga.org.au/ |
| Angelman syndrome |
Angelman Syndrome Australia |
| Ankylosing spondylitis | Ankylosing Spondylitis Australia Ph: (07) 3263 5216 W: www.asaustralia.org |
| Arthrogryposis multiplex | The Australian Arthogryposis Group (TAAG) Inc Ph: (02) 4938 8060/Ph 0417 803 573 W: www.taag.org.au |
| Asperger syndrome |
Asperger Services Australia |
| Asthma | The Asthma Foundation Ph: (03) 9329 2622 Free call: 1800 645 130 W: www.asthmaaustralia.org.au E: national@asthmaaustralia.org.au |
| Autism |
Autism Spectrum Australia Ph:1800 277 328 W: www.autismspectrum.org.au E: infoline@aspect.org.au |
|
Genetic Condition |
Support Group |
| Batten disease | Batten Disease Support & Research Association Ph: (02) 4334 5785 W: www.battens.org.au |
|
Beckwith Wiedemann syndrome |
Beckwith Wiedemann Syndrome Support Group |
| Bipolar disorder |
Mental Health Foundation of Australia Ph: +61 3 9826 1422 W: www.mhfa.org.au |
| Bowel cancer |
Cancer Council Australia |
| Breast cancer |
National Breast Cancer Centre |
|
C |
|
|
Genetic condition |
Support group |
| Cadasil |
Leukodystrophy Australia |
| Canavan Disease |
Australian Leukodystrophy Support Group Inc |
| Cancer |
Cancer Council Australia |
| Cardiac Conditions |
Heart Foundation Ph: 1300 362 787 W: www.heartfoundation.org.au |
|
|
Cardiomyopathy Association of Australia Ltd |
| Cardiovascular Disease |
See 'Cardiac conditions'. |
| Cerebellar Agenesis | Cerebellar Hypoplasia Support Network Inc Ph: (02) 6291 2845 W: www.codysheppard.com |
| Charcot Marie Tooth disease | Charcot Marie Tooth Association of Australia Inc Ph: (02) 9767 5105 W: www.cmt.org.au |
| CHARGE syndrome | The Australasian CHARGE Syndrome Association Ph: (02) 9605 8475 W: www.chargesyndrome.org.au |
| Chromosomal conditions |
ARCAN (Australian Rare Chromosome Awareness Network) Rare Chromosome Disorders Support Group |
|
Chromosome 18 Trisomy |
The Chromosome 18 Registry & Research Society(Aust) |
| Cleft lip and palate | CleftPALS New South Wales Ph: (02) 9294 8944 W: www.cleftpalsnsw.org.au |
| Congenital adrenal hyperplasia | Congenital Adrenal Hyperplasia Support Group Ph: (03) 9513 9255 W: http://www.cah.org.au/ |
| Cornelia De Lange syndrome | Cornelia De Lange Syndrome Association (Australasia) Inc Ph: (02) 9809 0287 W: CLICK HERE |
| Cranio-facial conditions | Australian Cranio-Maxillo Facial Foundation Ph: (08) 8267 4128 Free call: 1800 882 088 W: www.craniofacial.com.au |
| Creutzfeldt Jakob disease | CJD Support Group Pty Ltd Ph: (02) 9894 5168 Free call: 1800 052 466 W: www.cjdsupport.org.au |
| Cri Du Chat syndrome | Cri Du Chat Support Group of Australia Inc Ph: (03) 9975 9962 W: www.criduchat.asn.au E: info@criduchat.asn.au |
| Cystic Fibrosis |
Cystic Fibrosis Australia Ph: (02) 9889 5171 W: www.cysticfibrosis.org.au E: general@cysticfibrosisaustralia.org.au |
| Cystinosis | Australian Cystinosis Support Group Ph: (08) 9531 2135 |
| Cystinuria | Kidney Health Australia Info service: 1800 543 639 W: www.kidney.org.au |
|
D |
|
|
Genetic condition |
Support group |
| Deafness | SHHH Australia (Self Help for Hard of Hearing People) Ph: (02) 9144 7586 W: www.shhhaust.org |
| Diabetes |
Diabetes Australia Ph: (02) 6232 3800 / Helpline: 1300 136 588 W: www.diabetesaustralia.com.au |
| Down syndrome |
Down Syndrome NSW Ph: (02) 9841 4444 W: www.downsyndromensw.org.au |
|
E |
|
|
Genetic condition |
Support group |
| Ectodermal dysplasia | Australian Ectodermal Dysplasia Support Group Inc Ph: (02) 9755 5626 W: http://mail.ozed.org.au/ |
| Ehlers-Danlos syndrome |
Genetic Alliance Australia |
| Emery-Dreifuss Muscular Dystrophy |
Muscular Dystrophy NSW Ph: (02) 9809 2111 W: www.mdnsw.org.au |
| Eosinophilic Gastrointestinal Disorder (EGID) including Eosinophilic Oesophagitis (EoE) |
ausEE |
| Epidermolysis Bullosa | Dystrophic Epidermolysys Bullosa Research Association of Australia (DebRA) Inc Ph: (07) 4693 7003 W: www.debra.org.au |
| Epilepsy | Epilepsy Australia W: www.epilepsyaustralia.net |
|
F |
|
|
Genetic condition |
Support group |
| Fabry disease |
Fabry Support Group Australia |
| Facioscapulohumeral Muscular Dystrophy |
Muscular Dystrophy NSW |
| Familial hypercholesterolaemia |
Heart Foundation |
| Fanconi anaemia | Fanconi Anaemia Australia Ltd Ph: (08) 8244 5350 W: CLICK HERE E: info@fanconi.org.au |
| Fetal alcohol syndrome | MotherSafe Ph: (02) 9382 6539 Free call: 1800 647 848 W: www.mothersafe.org.au |
| FOXP1 syndrome | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
| Fragile X syndrome |
Fragile X Association of Australia Fragile X Alliance Inc |
| Friedreich Ataxia | Friedreich's Ataxia Research Association (Australasia) Ph: (03) 8615 4808 W: www.fara.org.au |
|
G |
|
|
Genetic condition |
Support group |
| Generalised arterial calcification of infancy (GACI) |
GACI Support Group Australia Rare Voices Australia |
| Gaucher disease | Gaucher Association of Australia Ph: (03) 9740 7203 W: CLICK HERE E: gaucher.australia@gmail.com |
| Graves disease | The Australian Thyroid Foundation Ltd Ph: (02) 9890 6962 W: https://www.thyroidfoundation.org.au/ |
| Guillain-Barre syndrome | Guillian-Barre Syndrome Association of NSW Ph: (02) 9617 0883 W: http://www.gbs-cidp-nsw.org.au/ |
|
H |
|
|
Genetic condition |
Support group |
| Haemophilia |
Haemophilia Foundation Australia |
| Hereditary Angioedema | HAE Australasia Ltd PO Box 285, Webb Street, Narre Warren VIC 3805 W: www.haeaustralasia.org.au E: fiona@haeaustralasia.org.au |
| Hereditary Haemochromatosis | Haemochromatosis Australia Ph: 1300 019 028 W: www.haemochromatosis.org.au |
| Hereditary lymphoedema |
Genetic Alliance Australia |
| Hereditary Spastic Paraplegia |
HSP Research Foundation Inc |
| Hirschsprung disease | Bowel Group for Kids Inc Ph: (02) 4659 6186 W: www.bgk.org.au |
| Huntington disease |
Australian Huntington's Disease Association (NSW) Inc Ph: (02) 9874 9777 W: www.ahdansw.asn.au |
| Hydrocephalus | Hydrocephalus Support Association Ph: (02) 9586 1057 W: www.hydrocephalus.org.au |
| Hypothyroidism | The Australian Thyroid Foundation Ltd Ph: (02) 9890 6962 W: https://www.thyroidfoundation.org.au/ |
|
I |
|
|
Genetic condition |
Support group |
| Immunodeficiency conditions | Immune Deficiencies Foundation Australia Ph: 1800 100 198 W: http://www.idfa.org.au/ E: info@idfaustralia.org |
|
J |
|
|
Genetic condition |
Support group |
| Jeune syndrome | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
|
K |
|
|
Genetic condition |
Support group |
| Kabuki syndrome | Support Aussie Kids with Kabuki Syndrome W: www.sakks.org Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
| Kidney conditions | Kidney Health Australia Ph: 1800 4543 639 W: www.kidney.org.au |
| Klippel-Feil syndrome |
Genetic Alliance Australia |
|
L |
|
|
Genetic condition |
Support group |
| Learning difficulties |
SPELD NSW |
| Leukodystrophy |
Leukodystrophy Australia Leukodystrophy Resource and Research Organisation Inc. |
| Limb differences | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
|
Lynch Syndrome |
Lynch Syndrome Australia |
| Lymphoedema | Lymphoedema Association of Australia Ph: (02) 4868 3641 W: www.lymphoedema.org.au |
|
M |
|
|
Genetic condition |
Support group |
| Marfan syndrome | Marfan Syndrome Support and Information W: http://www.marfanvic.org.au/ |
|
Mayer-Rokitansky |
Mayer-Rokitansky Kuster-Hauser |
| Melanoma |
The Cancer Council Australia Ph: (02) 8063 4100 W: www.cancer.org.au |
| GROW Ph: 1800 558 268 W: https://www.grow.org.au/ |
|
| Metabolic conditions | Metabolic Dietary Disorders Association (MDDA) Free call: 1800 288 460 W: https://www.mdda.org.au/ |
| Metachromatic leukodystrophy |
Leukodystrophy Australia |
| Mitochondrial diseases |
Australian Mitochondrial Disease Foundation |
| Motor neurone disease | Motor Neurone Disease Association of Australia Free call: 1800 777 175 W: www.mndaust.asn.au |
| Mowat-Wilson syndrome | Mowat Wilson Australian Support Website |
| Mucopolysaccharidoses | MPS Society Australia Ph: (02) 9476 8411 W: http://www.mpssociety.org.au/ E: info@mpssociety.org.au |
| Multiple myeloma | The Cancer Council Australia Ph: (02) 8063 4100 W: www.cancer.org.au |
| Muscular dystrophy | Muscular Dystrophy NSW Ph: (02) 9809 2111 W: www.mdnsw.org.au |
| Myasthenia Gravis | The Australian Myasthenic Association in NSW Ph: (02) 4283 2815 W: www.myasthenia.org.au |
|
N |
|
|
Genetic condition |
Support group |
|
Children's Tumour Foundation NF Australia |
|
|
O |
|
|
Genetic condition |
Support group |
| Ocular albinism |
Albinism Fellowship of Australia |
| Osteoporosis | Osteoporosis Australia Ph: (02) 9518 8140 W: www.osteoporosis.org.au |
|
P |
|
|
Genetic condition |
Support group |
| Pallister-Hall syndrome |
Pallister-Hall Syndrome (PHS) Support Hub |
| Pallister-Killian syndrome |
Pallister-Killian Syndrome Foundation of Australia |
|
The PKU (Phenylketonuria) |
The PKU (Phenylketonuria) Association of NSW Inc. |
| Pierre Robin syndrome | Pierre Robin Australia Ph: (03) 8751 1174 W: www.pierrerobin.org.au E: info@pierrerobin.org.au |
| Pituitary conditions | The Australian Pituitary Foundation Ph: 1300 331 807 W: www.pituitary.asn.au E: support@pituitary.asn.au |
|
Polycystic kidney disease |
Polycystic Kidney Disease Association Kidney Health Australia Ph: 1800 4543 639 W: www.kidney.org.au |
| Prader-Willi syndrome |
Prader-Willi Syndrome Association of Australia |
|
Pseudoxanthoma |
|
| Psoriasis | Psoriasis Australia W: www.psoriasisaustralia.org.au |
| Pudlak syndrome | Albinism Fellowship of Australia Ph: 1300 22 16 19 W: www.albinismaustralia.org |
|
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|
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There are currently no support groups listed under 'Q'. If you are aware of a condition or support group that should be included in this section, please contact us.
|
|
|
|
|
|
Genetic condition |
Support group |
| Rare Genetic Conditions | Syndromes Without A Name (SWAN) Australia Ph: 0404 280 441 Email: president@swanaus.org.au W: swanaus.org.au |
| Retinis pigmentosa | Retina Australia Free call: 1800 999 870 W: www.retinaaustralia.com.au |
| Rett syndrome |
Rett Syndrome Australian Research Fund |
|
Rubinstein-Taybi syndrome |
Genetic Alliance Australia |
|
|
|
|
Genetic condition |
Support group |
| Schizophrenia |
Mental Health Foundation of Australia Ph: (03) 9427 0407 W: www.mhfa.org.au |
| Scleroderma | Scleroderma Australia Website |
| Short stature |
Short Statured People of Australia Inc Ph: (02) 6332 4474 W: www.sspa.org.au |
| Shwachmann syndrome | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
| Smith Magenis syndrome |
Smith Magenis Syndrome (SMS) Australia |
| Sotos syndrome | Sotos Syndrome Association of Australasia Ph: 0425 156 845 W: www.sotos.org.au E: heather@sotos.org.au |
| Spina bifida |
Northcott Ph: (02) 9890 0990 W: www.northcott.com.au E: northcott@northcott.com.au |
| Spinocerebellar ataxia | Spina Cerebellar Ataxia Resources & Support Services Ph: (02) 9633 4424 W: www.scars.org.au |
| Stargardt disease | Vision Australia Ph: 1300 84 74 66 W: https://visionaustralia.org/ |
| Stickler syndrome | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
| Stillbirth | Red Nose Ph: 1300 308 307 W: https://rednose.org.au/ |
| Syndromes Without A Name (SWAN) Australia |
Syndromes Without A Name (SWAN) Australia Rare Voices Australia Genetic Alliance Australia |
|
|
|
|
Genetic condition |
Support group |
| Thalassaemia |
Thalassaemia Society of NSW |
| Torticollis, spasmodic | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
| Tourette syndrome | Tourette Syndrome Association of Australia Ph: (02) 9382 3726 W: www.tourette.org.au |
| Townes-Brocks syndrome |
Email for contact with physicians and family for Townes-Brocks syndrome Genetic Alliance Australia |
| Trisomy 13 (Patau syndrome) |
SOFT Australia Genetic Alliance Australia |
|
Tuberous sclerosis complex |
Tuberous Sclerosis Australia (TSA) 17 Linksview Road, Springwood NSW 2777 Ph: 1300 733 435 W: www.tsa.org.au E: info@tsa.org.au |
| Turner syndrome |
Turner Syndrome Association of Australia Ltd Ph: (07) 3298 6635 W: www.turnersyndrome.org.au E: info@turnersyndrome.org.au |
|
|
|
| Undiagnosed Genetic Conditions |
Syndromes Without A Name (SWAN) Australia Rare Voices Australia Genetic Alliance Australia |
|
|
|
|
Genetic condition |
Support group |
| Velo cardio facial syndrome | VCFS & 22q11 W: www.vcfsfa.org.au |
| Visual impairment | Vision Australia Ph: 1300 847 466 W: https://visionaustralia.org/ |
| Von Hippel Lindau disease | Von Hippel Lindau Family Alliance Australia Ph: (07) 5564 2474 W: www.vhl.org |
|
|
|
|
Genetic condition |
Support group |
| West syndrome | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
| Williams syndrome | Williams Syndrome Australia Ph: (02) 9295 8359 Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
| Wolf Hirschhorn syndrome | Genetic Alliance Australia Ph: (02) 9295 8359 W: www.geneticalliance.org.au E: info@geneticalliance.org.au |
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There are currently no support groups listed under 'X'. If you are aware of a condition or support group that should be included in this section, please contact us.
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There are currently no support groups listed under 'Y'. If you are aware of a condition or support group that should be included in this section, please contact us.
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|
|
|
|
Genetic condition |
Support group |
| Zellweger syndrome | Leukodystrophy Australia 1800 141 400 (toll free) W: http://www.leuko.org.au/ E: info@leuko.org.au |
When establishing the list, we prioritised contacts for those genetic condition support groups that were:
- based in NSW
- had a national office as well as or in lieu of a NSW branch
- the only group for the condition available in Australia, regardless of location.
