Support Groups
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.
If you can not find a support group relevant to your enquiry the Association of Genetic Support of Australasia (AGSA) is a not for profit organisation that can also help. AGSA 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.
There are other genetic support organisations in some Australian states. They are supported by the Australasian Genetic Alliance and are listed below:
ACT Self-Help Organisations United Together (SHOUT)
Genetic Support Council WA (GSCWA)
Genetic Support Network Victoria (GSNV)
New Zealand Organisation for Rare Disorders (NZORD)
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 .
If you cannot find a support group for a particular genetic condition, please contact the Association of Genetic Support of Australasia (AGSA).
A
Genetic Condition |
Support Group |
| Achondroplasia Fact Sheet |
Short Statured People of Australia Inc |
| Acoustic Neuroma |
Acoustic Neuroma Association of Australasia |
| Adrenoleukodystrophy |
Australian Leukodystrophy Support Group Inc |
| Alpha 1 antitrypsin deficiency |
Alpha-1 Association of Australia |
|
Alpha-thalassaemia |
Thalassaemia Society of NSW |
| Alport syndrome |
Alport Foundation of Australia |
| Alzheimer disease Fact Sheet |
Alzheimers Australia |
| Amyotrophic lacteral sclerosis |
Motor Neurone Disease Association |
| Androgen insensitivity syndrome | Androgen Insensitivity Syndrome Support Group Australia Inc Ph: (03) 9315 8809 W: www.vicnet.net.au/~aissg |
| 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 W: www.taag.org.au |
| Asperger syndrome Fact Sheet |
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 Fact Sheet |
Autism Spectrum Australia Ph: (02) 8977 8300 W: www.autismspectrum.org.au E: infoline@aspect.org.au |
B |
|
Genetic Condition |
Support Group |
| Batten disease | Batten Disease Support & Research Association Ph: (02) 4334 5785 W: www.battens.org.au |
|
Beckwith Wiedemann Syndrome Support Group |
|
| Bipolar disorder Fact Sheet |
Mental Health Foundation of Australia Ph: (03) 9427 0407 W: www.mhfa.org.au |
| Bowel cancer Fact Sheet |
Cancer Council Australia |
| Breast cancer Fact Sheet |
National Breast Cancer Centre Ph: (02) 9036 3030 W: www.nbcc.org.au |
C |
|
Genetic condition |
Support group |
| Cadasil |
Australian Leukodystrophy Support Group Inc |
| Canavan Disease | Australian Leukodystrophy Support Group Inc Ph: (03) 9845 2831/ Free call: 1800 141 400 W: www.alds.org.au |
| Cancer Fact Sheets 47-51 |
Cancer Council Australia (02) 8063 4100 W: www.cancer.org.au |
| Cardiac Conditions Fact Sheets 53-56 |
Heart Foundation Ph: 1300 362 787 W: www.heartfoundation.org.au |
|
Cardiomyopathy |
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 | Rare Chromosome Disorders Support Group Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
|
Chromosome 18 Trisomy |
The Chromosome 18 Registry & Research Society The Association of Genetic Support of Australasia Inc |
| 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: www.cahsga.org.au |
| Cornelia De Lange syndrome |
Cornelia De Lange Syndrome Association (Australasia) Inc Ph: (02) 9809 0287 W: www.cdlsaus.org |
| Cranio-facial conditions | Australian Cranio-Maxillo Facial Foundation Ph: (08) 8267 4128/1800 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 |
| Cyclic neutropenia |
Neutropenia Support Australia |
| Cystic Fibrosis Fact Sheet |
Cystic Fibrosis Australia Inc Ph: (02) 9878 5250 / 1800 232 823 W: www.cysticfibrosis.org.au E: general@cysticfibrosisaustralia.org.au |
| Cystinosis | Australian Cystinosis Support Group Ph: (08) 9531 2135 W: www.cystinosis.com.au |
| 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 Fact Sheet |
Diabetes Australia Ph: (02) 6232 3800 / Helpline: 1300 136 588 W: www.diabetesaustralia.com.au |
| Down syndrome Fact Sheet |
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: www.ozed.org.au |
| Ehlers-Danlos syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Emery-Dreifuss Muscular Dystrophy | Muscular Dystrophy NSW Ph: (02) 9809 2111 W: www.mdnsw.org.au |
| 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 Fact Sheet |
Heart Foundation |
| Fanconi anaemia | Fanconi Anaemia Australia Ltd Ph: 1300 350 091 W: www.fanconi.org.au E: info@fanconi.org.au |
| Fetal alcohol syndrome | MotherSafe Ph: (02) 9382 6539 / Free call: 1800 647 848 W: www.mothersafe.org.au |
| Fragile X syndrome Fact Sheet |
Fragile X Alliance Inc Fragile X Association of Australia |
| Friedreich Ataxia | Friedreich's Ataxia Research Association (Australasia) Ph: (03) 8615 4808 W: www.fara.org.au |
G |
|
Genetic condition |
Support group |
| Gaucher disease | Gaucher Association of Australia Ph: (03) 9740 7203 W: www.gaucherdisease.com.au E: gaucher.australia@gmail.com |
| Graves disease | The Australian Thyroid Foundation Ltd Ph: (02) 9890 6962 W: www.thyroidfoundation.com.au |
| Guillain-Barre syndrome |
Guillian-Barre Syndrome Association of NSW Ph: (02) 9869 1839 W: www.gbsnsw.org.au |
H |
|
Genetic condition |
Support group |
| Haemophilia Fact Sheet |
Haemophilia Foundation Australia Ph: (03) 9885 7800 W: www.haemophilia.org.au |
| Hereditary Haemochromatosis | Haemochromatosis Australia Ph: 1300 019 028 W: www.haemochromatosis.org.au |
| Hereditary lymphoedema | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Hereditary Spastic Paraplegia |
HSP Research Foundation Inc |
| Pudlak Syndrome | Albinism Fellowship of Australia Ph: 1300 22 16 19 W: www.albinismaustralia.org |
| Hirschsprung disease | Bowel Group for Kids Inc Ph: (02) 4659 6186 W: www.bgk.org.au |
| Huntington disease Fact Sheet |
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: www.thyroidfoundation.com.au |
I |
|
Genetic condition |
Support group |
| Immunodeficiency conditions |
Immune Deficiencies Foundation Australia Ph: 1800 100 198 W: www.idfaustralia.org E: info@idfaustralia.org |
J |
|
Genetic condition |
Support group |
| Jeune syndrome | Australian Jeune Syndrome Association Inc W: http://home.vicnet.net.au/~jeunesyn/ The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
K |
|
Genetic condition |
Support group |
| Kabuki syndrome | Support Aussie Kids with Kabuki Syndrome W: www.sakks.org The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
| Kidney conditions | Kidney Health Australia Ph: 1800 4543 639 W: www.kidney.org.au |
| Klippel-Feil syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
L |
|
Genetic condition |
Support group |
| Learning difficulties |
The Australian Federal of SPELD |
| Leukodystrophy | Australian Leukodystrophy Support Group Inc Ph: (03) 9845 2831/ Free call: 1800 141 400 W: www.alds.org.au |
| Limb differences | The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
| 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 in NSW W: www.marfan.net.au |
| Mayer-Rokitansky Kuster-Hauser Syndrome Support Group Ph: (03) 5028 4221 The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
|
| Melanoma Fact Sheet |
The Cancer Council Australia Ph: (02) 8063 4100 W: www.cancer.org.au |
|
Mental illness |
GROW Ph: 1800 558 268 W: www.grow.net.au |
| Metabolic conditions | Metabolic Dietary Disorders Association (MDDA) Free call: 1800 288 460 W: www.mdda-australia.org |
| Metachromatic leukodystrophy | Australian Leukodystrophy Support Group Inc Ph: (03) 9845 2831/ Free call: 1800 141 400 W: www.alds.org.au |
| Motor neurone disease | Motor Neurone Disease Association of Australia Free call: 1800 777 175 W: www.mndaust.asn.au |
| Mucopolysaccharidoses | MPS Society Australia Ph: (02) 9476 8411 W: 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 |
|
Neurofibromatosis |
Neurofibromatosis Association of Australia Inc |
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 Foundation (Aust) Ph: (07) 4634 0045 |
|
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 Association Kidney Health Australia Ph: 1800 4543 639 W: www.kidney.org.au |
|
| Prader-Willi syndrome |
Prader-Willi Syndrome Association of Australia |
|
The Association of Genetic Support of Australasia Inc |
|
| Psoriasis | Psoriasis Australia W: www.psoriasisaustralia.org.au |
Q |
|
|
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.
|
|
R |
|
Genetic condition |
Support group |
| Retinis pigmentosa | Retina Australia Free call: 1800 999 870 W: www.retinaaustralia.com.au |
| Rett syndrome |
Rett Syndrome Australian Research Fund |
|
Rubinstein-Taybi |
Rubinstein-Taybi Syndrome (RTS) Australia |
S |
|
Genetic condition |
Support group |
| Schizophrenia Fact Sheet |
Mental Health Foundation of Australia Ph: (03) 9427 0407 W: www.mhfa.org.au |
| Scleroderma | TScleroderma Association of Qld W: www.scleroderma.org.au |
| Short stature Fact Sheet |
Short Statured People of Australia Inc Ph: (02) 6332 4474 W: www.sspa.org.au |
| Shwachmann syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Smith Magenis syndrome |
Smith Magenis Syndrome (SMS) Australia |
| Sotos syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
| Spina bifida Fact Sheet |
Northcott Spina Bifida Group Ph: (02) 9890 0990 W: www.northcott.com.au E: admin@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: www.visionaustralia.org.au |
| Stickler syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
| Stillbirth | SIDS and Kids Ph: 1300 308 307 W: www.sidsandkids.org |
T |
|
Genetic condition |
Support group |
| Thalassaemia Fact Sheet |
Thalassaemia Society of NSW Ph: (02) 9550 4844 W: www.thalnsw.org.au |
| Torticollis, spasmodic | The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
| Tourette syndrome | Tourette Syndrome Association of Australia Ph: (02) 9382 3726 W: www.tourette.org.au |
| Townes-Brocks syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
| Trisomy 13 (Patau syndrome) Fact Sheet |
SOFT Australia |
|
Tuberous sclerosis complex |
Australian Tuberous Sclerosis Society Ph: 1300 733 435 W: www.atss.org.au E: info@atss.org.au |
| Turner syndrome Fact Sheet |
Turner Syndrome Association of Australia Ltd Ph: (07) 3298 6635 W: www.turnersyndrome.org.au E: info@turnersyndrome.org.au |
U |
|
|
There are currently no support groups listed under 'U'. If you are aware of a condition or support group that should be included in this section, please contact us.
|
|
V |
|
Genetic condition |
Support group |
| Velo cardio facial syndrome | VCFS & 22q11 W: www.vcfsfa.org.au |
| Visual impairment | Vision Australia Ph: 1300 847 466 W: www.visionaustralia.org.au |
| Von Hippel Lindau disease | Von Hippel Lindau Family Alliance Australia Ph: (07) 5564 2474 W: www.vhl.org |
W |
|
Genetic condition |
Support group |
| West syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Williams syndrome | Williams Syndrome Association Ph: (02) 9211 1462 The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
| Wolf Hirschhorn syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9211 1462 W: www.agsa-geneticsupport.org.au |
X |
|
|
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.
|
|
Y |
|
|
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.
|
|
Z |
|
Genetic condition |
Support group |
| Zelleweger syndrome | Australian leukodystrophy Support Group Inc Ph: (03) 9845 2831/ Free call: 1800 141 400 W: www.alds.org.au |
