Genetic Conditions Support Groups
A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | ZIf you cannot find a support group for a particular genetic condition, please contact the Association of Genetic Support of Australasia (AGSA).
How can I include my support group on this genetic condition support group list?
A
| Genetic Conditions | Support Groups |
| Achondroplasia Fact Sheet 38 |
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 X-linked |
Thalassaemia Society of NSW |
| Alport syndrome | Alport Foundation of Australia W: www.alport.org.au E: info@alport.org.au |
| Alzheimer disease Fact Sheet 45 |
Alzheimers Australia |
| Amyotrophic lacteral sclerosis |
Motor Neurone Diseas 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 43 |
Asperger Services Australia Ph: (07) 3865 2911 |
| 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 43 |
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 |
Beckwith Wiedemann Syndrome Support Group |
| Bipolar disorder Fact Sheet 58 |
Mental Health Foundation of Australia Ph: (03) 9427 0407 W: www.mhfa.org.au |
| Bowel cancer Fact Sheet 49 |
Cancer Council Australia |
| Breast cancer Fact Sheet 48 |
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) 9584 7070 / Free call: 1800 141 400 W: www.alds.org.au |
| Cancer Fact Sheets 48 - 51 |
Cancer Council Australia (02) 8063 4100 W: www.cancer.org.au |
| Cardiac Conditions Fact Sheets 53, 54, 55 and 56 |
Heart Foundation Ph: 1300 362 787 W: www.heartfoundation.org.au |
| Cardiomyopathy | Cardiomyopathy Association of Australia Ltd Message bank: 1300 552 622 / Heart Foundation Ph: 1300 362 787 W: www.cmaa.org.au |
| 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) 9244 1462 W: www.agsa-geneticsupport.org.au |
|
Chromosome 18 Trisomy |
The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| 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 | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Cystic Fibrosis Fact Sheet 33 |
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 57 |
Diabetes Australia Ph: (02) 6232 3800 / Helpline: 1300 136 588 W: www.diabetesaustralia.com.au |
| Down syndrome Fact Sheet 28 |
Down Syndrome NSW Ph: (02) 9683 4333 / W: www.dsansw.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 | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
F
| Genetic conditions | Support groups |
| Fabry disease | Fabry Support Group Australia Ph: (02) 9967 4395 W: www.fabry.com.au |
| Facioscapulohumeral Muscular Dystrophy |
Muscular Dystrophy NSW Ph: (02) 9809 2111 W: www.mdnsw.org.au |
| Familial hypercholesterolaemia Fact Sheet 53 |
Heart Foundation Infoline: 1800 362 787 W: www.heartfoundation.org.au |
| 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.sesiahs.health.nsw.gov.au/young_parents/mothersafe.asp |
| Fragile X syndrome Fact Sheet 42 |
Fragile X Alliance Inc Ph: (03) 9528 1910 W: www.fragilex.com.au |
| Friedreich Ataxia | Friedreich's Ataxia Research Association (Australasia) Ph: (03) 8615 4808 W: www.fara.org.au |
G
| Genetic conditions | 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 conditions | Support groups |
| Haemophilia Fact Sheet 40 |
Haemophilia Foundation Australia Ph: (03) 9885 7800 W: www.haemophilia.org.au |
| Hereditary haemochromatosis | Haemochromatosis Society Australia inc Ph: (07) 3345 8051 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 |
| Hermansky-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 44 |
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 conditions | Support group |
| Immunodeficiency conditions | Immune Deficiencies Foundation Australia Ph: (03) 9887 5151 W: www.idfaustralia.org E: info@idfaustralia.org |
J
| Genetic conditions | 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) 9244 1462 W: www.agsa-geneticsupport.org.au |
K
| Genetic conditions | Support groups |
| Kabuki syndrome | Support Aussie Kids with Kabuki Syndrome W: www.sakks.org The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Kidney conditions | Kidney Health Australia Ph: 1800 4543 639 W: www.kidney.org.au |
| Klippel-Feil syndrome | Australian Klippel-Feil Syndrome Support Group Ph: (02) 9113 2994 |
L
| Genetic conditions | Support groups |
| Learning difficulties |
The Australian Federal of SPELD |
| Leukodystrophy | Australian Leukodystrophy Support Group Inc Ph: (03) 9584 7070 / Free call: 1800 141 400 W: www.alds.org.au |
| Limb differences | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Lymphoedema | Lymphoedema Association of Australia Ph: (02) 4868 3641 W: www.lymphoedema.org.au |
M
| Genetic conditions | Support groups |
| Marfan syndrome | Marfan Syndrome Support and Information in NSW W: www.marfan.net.au |
| Mayer-Rokitansky Kuster-Hauser syndrome |
Mayer-Rokitansky Kuster-Hauser Syndrome Support Group Ph: (03) 5028 4221 The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Melanoma Fact Sheet 50 |
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) 9584 7070 / 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 conditions | Support groups |
| Neurofibromatosis |
Neurofibromatosis Association of Australia Inc |
O
| Genetic conditions | Support groups |
| Ocular albinism |
Albinism Fellowship of Australia |
| Osteoporosis | Osteoporosis Australia Ph: (02) 9518 8140 W: www.osteoporosis.org.au |
P
| Genetic conditions | Support groups |
| Pallister-Hall syndrome | Pallister-Hall Foundation (Aust) Ph: (07) 4634 0045 W: www.pallisterhall.com.au |
| 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 | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Pseudoxanthoma Elasticum |
The Association of Genetic Support of Australasia Inc |
| Psoriasis | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.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 conditions | Support groups |
| Retinis pigmentosa | Retina Australia Free call: 1800 999 870 W: www.retinaaustralia.com.au |
| Rett syndrome | Rett Syndrome Australian Research Fund W: www.rettsyndromeaust.org.au E: support@rettsyndromeaust.org.au |
S
| Genetic conditions | Support groups |
| Schizophrenia Fact Sheet 58 |
Mentall Health Foundation of Australia Ph: (03) 9427 0407 W: www.mhfa.org.au |
| Scleroderma | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Short stature Fact Sheet 38 |
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 Ph: (02) 6926 1612 |
| Sotos syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Spina bifida Fact Sheet 59 |
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) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Stillbirth | SIDS and Kids Ph: 1300 308 307 W: www.sidsandkids.org |
T
| Genetic conditions | Support group |
| Thalassaemia Fact Sheet 34 |
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) 9244 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) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Trisomy 13 (Patau syndrome) Fact Sheet 29 |
SOFT Australia |
| Tuberous sclerosis | Australian Tuberous Sclerosis Society Ph: 1300 733 435 W: www.atss.org.au E: info@atss.org.au |
| Turner syndrome Fact Sheet 32 |
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 conditions | 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 conditions | Support groups |
| 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) 9244 1462 W: www.agsa-geneticsupport.org.au |
| Wolf Hirschhorn syndrome | The Association of Genetic Support of Australasia Inc Ph: (02) 9244 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 conditions | Support groups |
| Zelleweger syndrome | Australian leukodystrophy Support Group Inc Ph: (03) 9584 7070 / Free call: 1800 141 400 W: www.alds.org.au |
This web page is managed and authorised by Centre for Genetics Education. Last updated: 15 July, 2010