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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

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 | Z

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:

ACT Self-Help Organisations United Together (SHOUT)

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
Ph: (02) 6332 4474
W: www.sspa.org.au
E: enquiries@sspa.org.au

Acoustic Neuroma

Acoustic Neuroma Association of Australasia
Ph: (03) 9510 1577
W: www.anaa.org.au
E: info@anaa.org.au

Adrenoleukodystrophy

Australian Leukodystrophy Support Group
Ph: Free call: 1800 141 400
W:  http://www.leuko.org.au/
E:  info@leuko.org.au

Alpha 1 antitrypsin deficiency

Alpha-1 Association of Australia
Ph: +61 7 3103 3363 | +61 410 108 104
W: www.alpha1.org.au
E: emailus@alpha1.org.au

Alpha-thalassaemia X-linked
mental retardation syndrome

Thalassaemia Society of NSW
Ph: (02) 9550 4844
W: www.thalnsw.org.au

Alport syndrome

Alport Foundation of Australia
W: www.alport.org.au
E: info@alport.org.au

Alzheimer disease

Alzheimers Australia
National:
Ph: (02) 6254 4233 / Free call 1800 100 500
W: www.alzheimers.org.au

NSW:

Ph: (02) 9805 0100
W: www.alzheimers.org.au
E: admin@alznsw.asn.au

Amyotrophic lacteral sclerosis

Motor Neurone Disease Association
Ph: (02) 9816 5322 / Free call 1800 777 175
W: www.mndaust.asn.au

E:
info@mndaust.asn.au

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
Ph: (02) 9520 5857
W: www.angelmansyndrome.org

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
Ph: (07) 3865 2911
W: www.asperger.asn.au
E: office@asperger.asn.au

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

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
Ph: (02) 9948 5466

Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E: info@geneticalliance.org.au

Bipolar disorder
Mental Health Foundation of Australia
Ph: +61 3 9826 1422
W: www.mhfa.org.au
Bowel cancer

Cancer Council Australia
Ph: (02) 13 11 20
W: www.cancer.org.au

Cancer Council NSW
Ph: (02) 9334 1900
W: www.cancer.org.au
E: feedback@nswcc.org.au

Breast cancer
National Breast Cancer Centre
Ph: (02) 9036 3030
W: www.nbcc.org.au

C

Genetic condition

Support group

Cadasil

Australian Leukodystrophy Support Group Inc
Ph: (03) 9845 2831 / Free call: 1800 141 400
E: mail@alds.org.au
W: www.alds.org.au

Canavan Disease

Australian Leukodystrophy Support Group Inc
Ph: (03) 9845 2831/ Free call: 1800 141 400
E: mail@alds.org.au
W: www.alds.org.au

Cancer
Cancer Council Australia
(02) 8063 4100
W: www.cancer.org.au
Cardiac Conditions
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

ARCAN (Australian Rare Chromosome Awareness Network)
http://www.arcan.org.au/

Rare Chromosome Disorders Support Group
Ph: (02) 9295 8359
W: www.geneticalliance.org.au


E:
info@geneticalliance.org.au

Chromosome 18 Trisomy
(Edward syndrome)

The Chromosome 18 Registry & Research Society(Aust)
W: www.chromosome18.org

61 Kuroki Street
Penshurst NSW  2222
Ph: +61 2 9580 5707
E: admin@chromosome18.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: CLICK HERE
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
Cystic Fibrosis
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
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
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:

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
Ph: 0422 201 013
W: www.fabry.com.au
E: info@fabry.com.au

Facioscapulohumeral
Muscular Dystrophy

Muscular Dystrophy NSW
Ph: (02) 9809 2111
W: www.mdnsw.org.au

Familial hypercholesterolaemia

Heart Foundation
Infoline: 1800 362 787
W: www.heartfoundation.org.au

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
Fragile X syndrome

Fragile X Association of Australia
Ph: (02) 9977 0074
W: www.fragilex.org.au

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 condition

Support group

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: www.thyroidfoundation.com.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
Ph: (03) 9885 7800
W: www.haemophilia.org.au

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
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.org.au
Hereditary Spastic Paraplegia

HSP Research Foundation Inc
Ph: (02) 4975 4754
W: http://www.hspersunite.org.au
E: inquiries@hspersunite.org.au

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: www.thyroidfoundation.com.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
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.org.au

L

Genetic condition

Support group

Learning difficulties

SPELD NSW
Ph: (02) 9739 6277
W: www.speldnsw.org.au
E: enquiries@speldnsw.org.au

Leukodystrophy

Australian Leukodystrophy Support Group Inc
Ph: (03) 9845 2831/ Free call: 1800 141 400
W: www.alds.org.au
E: mail@alds.org.au

Leukodystrophy Resource and Research Organisation  Inc.
Ph: (07) 3283 7224  Mobile: 0419 683 195
W: http://leukodystrophyresourceresearch.org/ 
E: bobwyborn@bigpond.com

Limb differences Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E: info@geneticalliance.org.au

Lynch Syndrome
- hereditary nonpolyposis
colorectal cancer (HNPCC) 

Lynch Syndrome Australia
Ph: 0416 070 036
W: www.lynchsyndrome.org.au
E: 

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
Kuster-Hauser syndrome

Mayer-Rokitansky Kuster-Hauser
Syndrome Support Group
Ph: (03) 5028 4221

Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.org.au
Melanoma
The Cancer Council Australia
Ph: (02) 8063 4100
W: www.cancer.org.au

Mental illness

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

Australian Leukodystrophy Support Group Inc
Ph: (03) 9845 2831/ Free call: 1800 141 400
E: mail@alds.org.au
W: www.alds.org.au

Mitochondrial diseases

Australian Mitochondrial Disease Foundation
W.  http://www.amdf.org.au/

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
W: http://www.mowatwilsonsupport.org/
 
Mucopolysaccharidoses MPS Society Australia
Ph: (02) 9476 8411

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

Children's Tumour Foundation NF Australia
Ph:(02) 9713 6111
W: http://www.ctf.org.au/
E: info@ctf.org.au

O

Genetic condition

Support group

Ocular albinism

Albinism Fellowship of Australia
W: www.albinismaustralia.org

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
Pallister-Killian syndrome

Pallister-Killian Syndrome Foundation of Australia
W:  www.pks.org.au
E:   info@pks.org.au
Ph:  0401 044 814

The PKU (Phenylketonuria)
Association of NSW Inc.

The PKU (Phenylketonuria) Association of NSW Inc.
E: info@pkunsw.org.au
W: http://www.pkunsw.org.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

Prader-Willi Syndrome Association of Australia
W: www.pws.org.au

Pseudoxanthoma
Elasticum

Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E: info@geneticalliance.org.au

Psoriasis Psoriasis Australia
W: www.psoriasisaustralia.org.au
Pudlak syndrome Albinism Fellowship of Australia
Ph: 1300 22 16 19
W: www.albinismaustralia.org

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
W: http://www.rettaustralia.com/about-rsaa/
Ph: 0418 561 796

Rubinstein-Taybi syndrome

Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.org.au

S

Genetic condition

Support group

Schizophrenia
Mental Health Foundation of Australia
Ph: (03) 9427 0407
W: www.mhfa.org.au
Scleroderma Scleroderma Australia
W: http://www.sclerodermaaustralia.com.au/
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
Ph: (02) 6926 1612

Sotos syndrome Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.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: www.visionaustralia.org.au
Stickler syndrome Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.org.au
Stillbirth Sids and Kids
Ph: 1300 308 307
W: www.sidsandkids.org

T

Genetic condition

Support group

Thalassaemia
Thalassaemia Society of NSW
Ph: (02) 9550 4844
W: www.thalnsw.org.au
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 Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.org.au
Trisomy 13 (Patau syndrome)

SOFT Australia
Ph: (02) 9521 6039
W: www.members.optushome.com.au/softaus

Genetic Alliance Australia
Ph: (02) 9295 8359
W: www.geneticalliance.org.au
E:
info@geneticalliance.org.au

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

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 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

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

Zellweger syndrome Australian Leukodystrophy Support Group Inc
Ph: (03) 9845 2831/ Free call: 1800 141 400
E: mail@alds.org.au
W: www.alds.org.au
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).


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.
facts-sheets

Fact Sheets

Fact Sheets

family-health-history

Family health history

Family health history

pregnancy

Pregnancy

Pregnancy

cancer-in-the-family

Cancer in the family

Cancer in the family