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support groups

This list represents support groups and associations only. In addition to this list of members AGSA has established a Contact Register over 450 genetic conditions representing families and individuals seeking contact. Please contact one of our information personnel on our contact details page.

Pick a letter:
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

Androgen Insensitivity Assoc.Support Group of Australia

Alagille Syndrome Support Group

Albino Support Group 

Alliance of Genetic Support Group, U.S.A.

Angelman Syndrome Assoc. Inc.

Alzheimer’s Assoc of Aust Inc.

A.P.I.A. (Aust.Primary Immune Deficiencies Assoc.)

Assoc. for Children With a Disability, Vic.

Assoc. for the Welfare of Child Health (AWCH)


Aust. Arthrogryposis Group (TAAG) Inc.

Aust. CHARGE Association

Aust. Crohn’s & Colitis Assoc.

Aust. Huntington’s Disease Association (Qld) Inc.

Aust. Huntington’s Disease Assoc. (NSW) Inc. 

Aust. Speak East Assoc.

Australasian Tuberous Sclerosis Society Inc.

Aust. Leukodystrophy Support Group

Aust. Society for Ectodermal Dysplasia

Autistic Assoc. of NSW


Batten’s Disease Support & Research Foundation

Beckwith-Weidemann Syndrome Support Group


Cardiomyopathy Assoc of Aust. Inc

Centacare Early Intervention.

Charcot Marie-Tooth Assoc. of Aust Inc.

Charcot Marie-Tooth Disease, USA


Coorinda Family Support Group

Cleft Pals, The Cleft Palate & Lip Society

Coeliac Society of NSW Inc.

Congenital Adrenal Hyperplasia Support Group

Cornelia de Lange Syndrome Support Group 

Cri du Chat Syndrome Support group of Australia

CVS Support Group (WA)

Cystic Fibrosis Assoc of Qld Ltd.

Cystic Fibrosis Assoc. of Vic

Cystic Fibrosis Assoc of ACT

Cystic Fibrosis Foundation, North Ryde.


DIAL (Qld)

Donor Conception Support Group


Depressive & Manic Depressive Assoc.


Early Education Clinic, North Sydney

Ehlers-Danlos Syndrome Support Group

Exceptional Parent (USA)


Fabry’s Support Group Inc.(Vic)

Family Advocacy

Family Planning Assoc. 

FAP Register (NSW Cancer Council)

Fragile X Assoc of Australia

Friedreich Ataxia Assoc of NSW


Gaucher Assoc. of Australia

Genzyme Australia Pty. Ltd.

Genetic Interest Group (GIG)

Haemochromatosis Information Service & Support Group NSW

Haemophilia Foundation NSW

Hereditary Haemorrhagic Telangiectasia

Hereditary Fructose Intolerance

Hunter Orthopaedia School

Huntingtons Disease Assoc. (NSW)

Huntingtons Disease Assoc. (QLD)



Klinefelter Syndrome Support Group

Kurrajong Early Intervention

Leukodystrophy Foundation (USA)

Leighs Disease Support Group

Lowe’s Syndrome Assoc. Inc.(USA)

Lysosomal Storage Disorders

Maternity Alliance

M.P.S. Society

Marfan Syndrome Support Assoc. NSW

Meniere’s (NSW) Support Group

Motor Neurone Disease Assoc. of NSW Inc.

Multiple Epiphyseal Dysplasia Assoc.

Muscular Dystrophy Assoc of NSW 

Muscular Dystrophy Assoc (NZ) Inc.


National Council of Intellectual Disability

Neurofibromatosis Assoc.

Noonan Syndrome Support Group

NSW Genetics Education Program

NSW Cancer Council

Osteopetrosis  Support Group

Osteogenesis Imperfecta of Aust.

Parents Bereavement Support Group

Parent to Parent (NZ)

Pen-Parents of Aust. (ACT)

PKU Assoc of  NSW

Psoriasis Society

Pseudoxanthoma Elasticum Support Group

Prader-Willi Syndrome Assoc

Pyruvate dehydrogenase deficiency.

Rare Chromosomes Disorders Support Group

Retinitis Pigmentosa Society of NSW Inc.

Rett Syndrome Assoc. of Aust.

Royal Blind Society of  NSW

R.T.M.D.C. (U.K.)



Short Statured People of Aust (NSW)

Short Statured People  of Aust (Vic)

Short Statured People of Aust. (SA)

Spinal Muscular Atrophy

Schizophrenia Fellowship NZ

Smith Magenis Syndrome Support Group Inc.

Spastic Society of Victoria

Spina Bifida Assoc. of NSW

Spina Bifida Assoc. of  WA Inc.

Society of Ectodermal Dysplasia

SOFT Australia

Southern Child Care Support Program

Sotos Syndrome Support Group

The Northcott Society

Thalassaemia Society of  NSW

Turner Syndrome Assoc of Aust. Ltd. (QLD)

Turner Syndrome Assoc. of Aust. Ltd. (NSW)

Uncontrolled Epilepsy Support Assoc (Vic)

United Leukodystrophy Foundation (USA)

Velo-Cardio-Facial Syndrome Foundation of Australia.

Wellington Huntington’s Disease Assoc.(Inc.) (NZ)

Wolf-Hirschhorn 4p- Syndrome Support Group

Williams Syndrome Association 

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