Genetic Conditions & Support Groups
If you cannot find your condition here, or you would like to add a support group to the list, please contact AGSA directly. If you know of a change of contact details for a support group listed here, please contact AGSA so that we can update the website. Please note that some support groups are listed with the prefix 'Australian'. You may also want to try searching the site using the search option.
a
- Aarskog syndrome
- Achondroplasia
- Acid Maltase Deficiency
- Acoustic Neuroma
- Acrocallosal syndrome
- ACT Muscular Dystrophy Association Inc.
- Adams Oliver syndrome
- Adrenoleukodystrophy
- Ageing Disability and Homecare Department
- Aicardi syndrome
- Alagille syndrome
- Albinism
- Albinism Fellowship of Australia Inc
- Alkaptonuria
- Alpha l Antitrypsin Deficiency
- Australian Alpha1 Association (A1AD)
- Alpha Manniosidosis
- Alpha Thalassaemia X-Linked Mental Retardation
- Alport syndrome
- Alstroms syndrome
- Alzheimer's Australia
- Amyotrophic Lateral Sclerosis
- Androgen Insensitivity
- Androgen Insensitivity Syndrome (AIS) Support Group
- Angelman syndrome
- Angelman Syndrome Association
- Aniridia
- Aniridia Network
- Anticardiolipin AB Type
- Antiphospholipid syndrome
- Ankylosing Spondylitis
- Apert syndrome
- Argininosuccinic Aciduria & Citrullinaemia
- Aspergers syndrome
- Association for Children With a Disability, Vic.
- Association for the Wellbeing of Children in Healthcare (AWCH)
- Aussie F.O.L.K.S., The Australian Landau Kleffner Association
- Australian Addison's Disease Assoc. Inc
- Australian Arthrogryposis Group (TAAG)
- Australian Cranio-Maxillo Facial Foundation
- Australian Crohn's and Colitis Association (ACCA)
- Australian Cystinosis Support Group
- Australian Ehlers Danlos Syndrome Support Group
- Aust. Huntington's Disease Association (Qld) Inc.
- Aust. Huntington's Disease Assoc. (NSW) Inc.
- Australian Jeune Syndrome Association Inc
- Australian Klippel-Feil Syndrome Support Group
- Australian Leukodystrophy Support Group Inc. (ALDS)
- Australian MPS Society
- Australian Myasthenic Association in NSW
- Australian Niemann Pick Type C Disease Foundation Inc
- Australian Primary Immune Deficiencies Association (A.P.I.A.)
- Australian Sotos Syndrome Support Group
- Australian Speak Easy Association
- Australian Sturge-Weber Support Group
- Australasian CHARGE Syndrome Association Australia
- Australasian Sotos Syndrome Support Group
- Australasian Tuberous Sclerosis Society Inc
- Australian Thyroid Foundation
- Australian Society for Ectodermal Dysplasia
- Australian Wolf Hirschhorn Syndrome Support Group
- Autism Spectrum (Aspect) Australia
- Ataxia -hereditary
b
- Baller-Gerold syndrome
- Bannayan-Riley-Ruvalcaba syndrome
- Bardet-Biedl Society
- Bartter syndrome
- Batten Disease
- Batten’s Disease Support & Research Association
- Beckwith-Wiedemann syndrome
- Beckwith-Weidemann Syndrome Support Group
- Behr syndrome
- Berardinelli syndrome
- Bilateral Iris Coloboma
- Bloom syndrome
- Blount's Disease
- Borjeson-Forssman-Lehmann syndrome
- Bowel Group for Kids
- BPES
- Brown syndrome
c
- Caffeys familial neurovisceral lipidosis
- Caffeys generalized gangliosidosis
- Caffeys Pseudo-Hurler syndrome
- Camptomelic Dysplasia
- Canavans Disease
- Cardio Facial Cutaneous syndrome
- Cardiomyopathy
- Cardiomyopathy Association of Australia Ltd.
- Caroli syndrome
- Carpal-tarsal osteolysis
- Carpenter syndrome
- Centacare Disability Early Intervention Program
- Central Core Disease
- Centre for Developmental Disabilities
- Centre for Genetics Edutaion, The
- Cerebellum Hypoplasia
- Cerebellar Hypoplasia Support Network Inc
- Charcot-Marie-Tooth Disease
- Charcot-Marie Tooth Association of Australia
- CHARGE syndrome
- Chondrodysplasia
- Chronic Granulomatous disease
- Chromosome 18 abnormalities
- Chromosome 18 Registry & Research Society (Aust), The
- Chromosome Disorders - rare
- Cleft Pals, The Cleft Palate & Lip Society
- Cleidocranial dysplasia
- CLIMB Children Living with Inherited Metabolic Diseases
- Cobalamin E, C/G deficiency
- Cockayne syndrome
- Coeliac Society of Australia Inc.
- Coffin-Lowry syndrome
- Coffin-Siris syndrome
- Cohen syndrome
- Combined Immune deficiency disease
- Congenital Adrenal Hyperplasia
- Congenital Adrenal Hyperplasia (CAH) Support Group
- Congenital Alopecia Totalis
- Congenital Anodontia
- Congenital Cone dystrophy
- Congenital Disorder of Glycosylation
- Congenital Hyperinsulinism
- Congenital Myotonic Dystrophy
- Congenital Protein C Deficiency
- Congenital Prune Belly syndrome
- CONTACT A FAMILY, U.K.
- Cooleys Anaemia - Thalassaemia
- Cornelia-de Lange syndrome
- Cornelia de Lange Syndrome Australasia Association (CdLS)
- Cornelia de Lange Syndrome Australasia Association (NSW)
- Corticobasal degeneration
- Costello syndrome
- Craniosynostosis syndrome
- Creutzfeldt Jacob Disease
- Creutzfeldt Jacob Disease Support Group Pty Ltd
- Cri-du-chat syndrome
- Cri Du Chat Support Group of Australia
- Crohn Disease and Colitis
- Crouzon syndrome
- Cushing syndrome
- Cyclical Vomiting syndrome
- Cyclical Vomiting Syndrome (CVS) Support Australia
- Cystic Fibrosis Australia Inc
- Cystinosis
- Cystinosis Support Group, Australian
- Cystinuria
- Cytochrome C. Oxidase Deficiency
d
- Dandy-Walker Malformation
- Darling Point Special School
- De Barsy syndrome
- Dejerine-Sottas disease
- Desbuquois syndrome
- Developmental Verbal Dyspraxia
- Diastematomyelia
- Drash syndrome
- Donor Conception Support Group
- Double Y syndrome
- Duane syndrome
- Dubowitz syndrome
- D2 Hydroxyglutaric acidurdia
- Dysautonomia
- Dyschondrosteosis
- Dystrophic Epidermolysis Bullosa Research Association (DEBRA) NSW. Inc.
e
- Early Education Clinic, North Sydney
- Early Childhood Intervention Service, Tasmania
- Ebsteins Anomaly of the Tricupsid Valve
- Ectodermal dysplasia
- Ectodermal Dysplasia Support Group
- Ectrodactyly
- Ehlers-Danlos syndrome
- Ellis-Van Creveld syndrome
- Emery Dreifuss Muscular Dystrophy
- Encephalocraniocutaneous Lipomatosis
- Epidermal Nevus syndrome
- Epidermolysis Bullosa, Dystrophic
- Epilepsy Australia
- Erythropoietic protoporphyria
f
- Fabry Disease
- Fabry Support Group Australia Inc.
- Facial Haemangioma
- Facial Paralysis / Moebius Syndrome
- Factor V Leiden
- Familiali adenomatous polyposis coli
- Familiali Hiberian Fever
- Familiali Mediterranean Fever
- Familiali Spastic Paraparesos
- Families of Children with a Disability Support Group (FOCDSG)
- Family Planning NSW
- Fanconi Anaemia
- FAP Register (NSW Cancer Council)
- Farber Lipogranulomatosis
- Fazio-Londes syndromei
- FG syndromei
- Fibrodysplasia Ossificans
- Fishi Odor syndromei
- Fibromyalgia hermaphroditism
- 48, XXXY
- 48, XXYY
- 49, XXXXY
- Fragile X Alliance Inc.
- Fragile X Association of Australia
- Fragile X syndromei
- Family Resource and Network Support Inc (FRANS)
- Fraser syndromei
- Friedreich's Ataxia
- Friedreich Ataxia Research Association (NSW)
- Frontonasal Dysplasia
- Fryns syndromei
- Fukuyama syndromei
g
- Galactosaemia
- Gardner syndromei
- Gaucher Disease
- Gaucher Association of Australia
- Gitelman sydnrome
- Glucose 6 Phosphaate Dehydrogenase (G6PD) deficiency
- Glucosidosis Enzyme deficiency
- Glycogen Storage Diseases
- GM1 Ganliosidosis
- Goldenhar syndromei
- Gorllin syndromei
- Goltz syndromei
- Graves Disease
- Guillain-Barre Syndromei Association of NSW
h
- Haemochromatosis
- Haemochromatosis Society Australia Inc
- Haemophilia Foundation Australia
- Hailey-Hailey Disease
- Hajdu-Cheney syndromei
- Hallermann-Streiff syndromei
- Hallervorden-Spatz Disease
- Hartnup Disease
- Hastings Early Intervention Service, Port Macquarie
- Hemihypertrophy
- Hemimegalencephaly
- Hereditaryi Angioneurotic Edema
- Hereditaryi Fructose Intolerance
- Hereditaryi Haemorrhagic Telangiectasia (Rendu Osler Weber syndromei)
- Hereditaryi Multiple Exostoses
- Hereditaryi Spastic Paraplegia
- Hereditaryi Spherocytosis
- Hirschsprung Disease
- Holt Oram syndromei
- Holoprosencephaly
- Homocystinuria
- Homolateral Brain syndromei
- HSP Research Foundation
- Hunter syndromei
- Huntington Disease
- Huntington's Disease Assoc. (NSW) Inc., Aust
- Huntington's Disease Association (Qld) Inc., Aust
- Huntington’s Disease Associations of NZ
- Hydranencephaly
- Hydrocephalus
- Hydrocephalus Support Association
- Hydronephrosis
- Hyperargininaemia
- Hyper IGE syndromei
- Hypertrophic Cardiomyopathy
- Hypoadrenal Hyperthyroidism
- Hypomelanosis of Ito
- Hypophosphatemic Bone Disease (HBD)
- Hypopituitarism
- Hypoplastic left heart syndromei
- Hypoplastic Primary Vitreous
- Hypotension Orthostatic
- Hypothyroidism
i
- Information of Disability and Education Awareness Service I.D.E.A.S. Inc
- Idiopathic pulmonary fibrosis
- Idiopathic thrombocytopenic purpura
- Immotile Cilia syndromei
- Immune deficiency disorders
- Immune Deficiencies Foundation Australia
- Incontinentia Pigmenti
- Ivermark syndromei
j
- Jacobsen syndromei
- Jeune syndromei
- Jeune Syndromei Association Inc.,Australia
- Job syndromei
- Johanson-Blizzard syndromei
- Joubert syndromei
k
- Kabuki syndromei
- Kallmann syndromei
- Kawasaki syndromei
- Kearns Sayre syndromei
- Keratosis follicularis spinulosa decalvans
- Kidney Health Australia
- Kidney Support Network of QLD
- Klinefelter syndromei (47,XXY)
- Klippel-Feil syndromei
- Klippel Trenaunay Weber syndromei
- Krabbe Disease
- Kurrajong Early Chilhood Intervention Service
- Kyphomelic Dysplasia
l
- Landau-Kleffner syndromei
- Langer-Giedion syndromei
- Larsen syndromei
- Laurence-Moon-Biedl
- Lebers Optic Atrophy
- Leigh Disease
- Leopard syndromei
- Leri-Weill syndromei
- Lesch Nyhan syndromei
- Leukodystrophy
- Leukodystrophy Support Group Inc. (ALDS), Australian
- Li Fraumeni
- Limb Girdle Muscular dystrophy
- Lipodystrophy & Brown's syndromei
- Lisscencephaly
- Lissencephaly Network of Australia
- Long-chain-3-hydroxyacyl coenzyme A dehydrogenase deficiency
- Long QT syndromei
- Lowe syndromei
- Lowe Syndromei Association Inc. (USA)
- Lujan-Fryns syndorme
- Lupus
- Lupus Association of NSW Inc.
- Lymphangioleiomyomatosis Australia
- Lymphas Genphasia
- Lymphoedema Association of Australia
- Lysosomal Storage Disorders
- Lysosomal Diseases Australia
m
- Machado Joseph syndromei
- Maple Syrup Urine Disease
- Marfan syndromei
- Marfan Syndromei Association Victoria
- Mayer-Rokitansky Kuster-Hauser syndromei
- Mayer-Rokitansky Kuster-Hauser Syndromei Support Group
- Megalocornea Mental Retardation
- MELAS syndromei
- Meniere’s Disease
- Meniere’s Australia
- Menke syndromei
- Mental Illness Fellowship of Australia Inc
- Metabolic Dietary Disorders Association (MDDA)
- Metachondromatosis
- Methylmalonic acidemia
- Microcephaly
- Miller-Dieker syndromei
- Minicore disease
- Mitochondrial Myopathies
- Moebius syndromei
- Monosomyi 9p
- Mowat Wilson syndromei
- Motor Neurone Disease
- Motor Neurone Disease Association of Australia
- Mucopolysaccharide & Related Diseases Society Aust (MPS)
- Mucopolysaccharidosis
- Mullerian Duct Agenesis
- Multiple Endocrine Neoplasia 2a
- Multiple Endocrine Neoplasia 2B
- Multiple Epiphyseal Dysplasia
- Multiple Exostoses
- Muscular Dystrophy Association (MDA)
- Muscular Dystrophy Association of NSW
- Muscular Dystrophy & Facioscapulohumeral Dystrophy
- Myasthenia Gravis
- Myotonic dystrophy
- Myotubular Myopathy
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- Nager & Miller syndromei
- Nail Patella syndromei
- Narcolepsy
- Narcolepsy and Overwhelming Daytime Sleep Society of Australia Inc (NODSS)
- National Council of Intellectual Disability
- Netherton syndromei
- Neuroaxonal Dystrophia
- Neurofibromatosis
- Neurofibromatosis Association of Australia (NFAA)
- Neuronal Intestinal Dysplasia
- New Zealand Organisation for Rare Disorders
- Neuronal Intestinal Dysplasia (NID)
- NiDKiDS Support Group Ltd
- Niemann-Pick Disease
- Nonketotic Hyperglycinaemia
- Noonan syndromei
- Norrie syndromei
- Nystagmus
o
- Oculo-dento-digital syndromei
- Ohdo syndromei
- Olivo-Ponto-Cerebellar-Atrophy
- Olliers Disease
- Ophthalmia: Anophthalmia & Microphthalmia
- Opitz Fg syndromei
- Opitz trigonocephaly
- Oral-Facial-Digital syndromei
- Organic acidemia
- Ornithone transcarbamylase deficiency
- Osteogenesis Imperfecta
- Osteogenesis Imperfecta Society of Australia
- Osteopetrosis
p
- Paget disease
- Paget's Disease Support Group
- Pallister-Hall syndromei
- Pallister-Hall Foundation (Aust)
- Pallister-Fillian syndromei
- Parent to Parent (NZ)
- Parent To Parent Gippsland
- Paroxysmal Kinesigenic choreoathetosis
- Paroxysmal Nocturnal Haemoglobinuna
- Partington syndromei
- Peho syndromei
- Pelizaeus-Merzbacher Disease
- Pena-Shokeir syndromei type1
- Pendred syndromei
- Peripheral Neuropathy (CMT TypeII)
- Perthes syndromei
- Peutz-Jeghers syndromei
- Phenylketonuria (PKU)
- Picks Disease
- Pierre Robin syndromei
- Pierre Robin Australia Information Support and Education (PRAISE)
- Pierre Robin Australia Support Service
- PKU Assoc of NSW Inc
- Poland syndromei
- Polyostic Fibrous Dysplasia
- Polycystic Kidney Disease Association
- Pompe disease
- Potter syndromei
- Popliteal Pterygium syndromei
- Prader-Willi syndromei
- Prader-Willi Syndromei Association
- Primary Immune Deficiency
- Primary Immunodeficiency Association (APIA), Australian
- Progressive Myoclonic Epilepsy
- Progressive Supranuclear Palsy
- Proteus syndromei
- Pseudohypoparathyroidism
- Pseudoxanthoma Elasticum (PXE)
- Pseudoxanthoma Elasticum Support Group
- PXE Support Group
- Pycnodysostosis
- Pyridoxine dependency
- Pyruvate dehydrogenase deficiency
- Pyruvatekinase deficiency
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- Rare Chromosomes Disorders(dupliciations, deletions, inversions, tetrasomies, mosaics, translocations, ring)
- Rare Chromosomes Disorders Support Group
- Raynaud disease
- Reflex sympathetic dystrophy syndromei
- Refsum disease
- Reinfenstein syndromei
- Retina Australia (NSW) Inc.
- Retina Australia (Vic) Inc.
- Retinitis Pigmentosis
- Rett syndromei
- Rett Syndromei Association of Australia
- Richardson-Steele-Oblizewski syndromei
- Russel-Silver syndromei
- Rubinstein-Taybi syndromei
s
- Saethre-Chotzen syndromei
- SAFDA Support After Foetal Diagnosis of Abnormality
- Sandhoffs disease
- SANDS Support After Neonatal Death & Stillbirth
- Sanfilippo disease
- Sarcoidosis
- Schinzel Giedion syndromei
- Schizophrenia
- Schizophrenia Fellowship NSW
- Schmid Type Metaphyseal Chondrodysplasia
- Scope Victoria
- Severe Immune Deficiency
- Short Stature and Skeletal Dysplasia
- Short Statured People of Australia (SSPA)
- Shprintzen syndromei (Velo Facial Cardio syndromei)
- Shwachman syndromei
- Shwachman-Diamond syndromei
- Shwachman-Diamond Syndromei - Australia Inc
- Shy Drager syndromei
- Simpson Golabi Behmel syndromei
- Sjogren’s syndromei
- Sjogren’s Syndromei Information Line
- Smith-Lemli-Opitz syndromei
- Smith-Magenis syndromei
- Smith Magenis Syndromei (SMS) Australia
- Smith Magenis Syndromei (SMS) Support Group of Australia
- SOFT Australia
- Sotos syndromei
- Sotos Syndromei Support Group,. Australian
- Spina Bifida
- Spina Bifida Group of NSW
- Spina Bifida Assoc. of WA Inc.
- Spinal Muscular Atrophy
- Spinocerebellar Ataxia
- SpinoCerebellar Ataxia Resources and Support Service
- Spondylocostal Dysplasia
- Spondylometaepiphyseal dysplasia
- Spondyloepiphyseal Dysplasia
- Stargardts Disease
- Stevens Johnson syndromei
- Stickler syndromei
- Stickler Syndromei Australia Support Service (SSASS)
- Sturge Weber
- Stuttering
- Succinci Semialdehyde Dehydrogenase deficiency
- Sudden Arrhythmia Death Syndromes (SADS) Foundation
- Support Organisation for Trisomyi and Related Disorders (SOFT) in Australia
- Supporting Aussie Kids with Kabuki Syndromei
- Syndromes Without A Name (SWAN)
- Systemic Lupus Erythematosus
t
- TAR syndromei
- Tay Sachs disease
- Tetrasomyi 9p osteoporosis
- Thalassaemia
- Thalassaemia Society of NSW
- Thalassaemia Society of Victoria
- The Centre for Geneticsi Education
- TOF/VATER Network
- Tourette syndromei
- Tourette Syndromei Association of Australia
- Townes-Brocks syndromei
- Townes-Brocks Syndromei Group
- Treacher-Collins syndromei
- Trichothiodystrophy (Tay syndromei
- Trimethylaminuria (TMAU)
- Triple X syndromei (47,XXX
- Trisomyi 13 (Patau syndromei), Trisomyi 18 (Edward syndromei)
- Tuberous Sclerosis
- Tuberous Sclerosis Society Inc., Australian
- Turner syndromei (45,X)
- Turner Syndromei Assoc. of Aust. Ltd. (NSW)
- Turner Syndromei Association of Australia Ltd
- Tyrosine Anaemia
u
v
- VATER Association
- Velo-Cardio-Facial Syndromei
- Velo-Cardio-Facial Syndromei Foundation of Australia
- Vision Australia
- Von Hippel-Lindau syndromei
- Von Hippel-Lindau Family Alliance Australia
- Von Willer brand disease
w
- Weaver syndromei
- Weill-Marchesani syndromei
- Werdnig-Hoffman syndromei
- West syndromei
- West Syndromei Association
- Wiedemann-Rautenstrauch syndromei
- Williams syndromei
- Williams Syndromei Association of Aust. Inc.
- Williams Syndromei Family Support Group (Vic) Inc
- Wiskott-Aldrich syndromei
- Wolf-Hirschhorn syndromei
- Wolf-Hirschhorn Syndromei Support Group., Australian
- Wolff-Parkinson-White syndromei
- Wolmans disease
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- Xeroderma Pigmentosa
- X-linked Agammaglobulinanaemia
- X-linked Hypophosphatemia
- XLP syndromei
- XYY syndromei
z
AGSA – Sat, 02/07/2005 – 19:08