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Notice of 2023 AGM
GUARD Collaborative Australia
GSNV Half Year Reviews & Full Year Reviews
Bits and Pieces
Lived Experience Series
GSNV Research
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GSNV welcomes the 2023/24 Federal Budget outcomes for Health Consumers
UN General Assembly Universal Health Coverage meeting, New York
November 21-23 2023: The Inaugural National Multicultural Health and Wellbeing Conference
LINEAGE PROJECT
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Our Strategic Plan
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Our Advocacy Principles
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Events
October Practical Wellness Month 2023
Rare Disease Day 2023
Community Events
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Resources for families and individuals
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Can’t Find a Support Group?
Resources for support groups
Health Professionals
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Volunteer Resources
Speakers Bureau
News & Research
Notice of 2023 AGM
GUARD Collaborative Australia
GSNV Half Year Reviews & Full Year Reviews
Bits and Pieces
Lived Experience Series
GSNV Research
Self Nomination Forms
GSNV welcomes the 2023/24 Federal Budget outcomes for Health Consumers
UN General Assembly Universal Health Coverage meeting, New York
November 21-23 2023: The Inaugural National Multicultural Health and Wellbeing Conference
LINEAGE PROJECT
About
Our Strategic Plan
Our Vision and Mission
Our Advocacy Principles
How we can help you
Our Committee
Annual Report
Our Team
Become a Member/Donate
Events
October Practical Wellness Month 2023
Rare Disease Day 2023
Community Events
Submit your event
Community & Professionals
Individuals and Families
Navigating the health system
Mental Health
National Disability Insurance Scheme
Patient Pathways Program
Resources for families and individuals
Support Groups
Australasian Support Networks
Can’t Find a Support Group?
Resources for support groups
Health Professionals
Volunteer
Volunteer Resources
Speakers Bureau
News & Research
Notice of 2023 AGM
GUARD Collaborative Australia
GSNV Half Year Reviews & Full Year Reviews
Bits and Pieces
Lived Experience Series
GSNV Research
Self Nomination Forms
GSNV welcomes the 2023/24 Federal Budget outcomes for Health Consumers
UN General Assembly Universal Health Coverage meeting, New York
November 21-23 2023: The Inaugural National Multicultural Health and Wellbeing Conference
LINEAGE PROJECT
Menu
About
Our Strategic Plan
Our Vision and Mission
Our Advocacy Principles
How we can help you
Our Committee
Annual Report
Our Team
Become a Member/Donate
Events
October Practical Wellness Month 2023
Rare Disease Day 2023
Community Events
Submit your event
Community & Professionals
Individuals and Families
Navigating the health system
Mental Health
National Disability Insurance Scheme
Patient Pathways Program
Resources for families and individuals
Support Groups
Australasian Support Networks
Can’t Find a Support Group?
Resources for support groups
Health Professionals
Volunteer
Volunteer Resources
Speakers Bureau
News & Research
Notice of 2023 AGM
GUARD Collaborative Australia
GSNV Half Year Reviews & Full Year Reviews
Bits and Pieces
Lived Experience Series
GSNV Research
Self Nomination Forms
GSNV welcomes the 2023/24 Federal Budget outcomes for Health Consumers
UN General Assembly Universal Health Coverage meeting, New York
November 21-23 2023: The Inaugural National Multicultural Health and Wellbeing Conference
LINEAGE PROJECT
Directory of Genetic and Rare Disease Support Groups
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Select...
-associated CIP "
12967870805
12967923213
12967925812
12967989212
12968046570
12968284677
12968678288
12970584987
12971239053
12971339976
13-17th Sept
Aarskog Syndrome
Achromatopsia
Acoustic Neuroma
Acquired Brain Injury
Acromegaly
Acute Necrotizing Encephalopathy
Adj Assoc Prof Bo Davis
Aicardi Syndrome
Aicardi-Goutieres syndrome
Albinism
Allan-Herndon-Dudley syndrome
Alopecia Areata
Alpha-1 Antitrypsin Deficiency
Alport Syndrome
Alström Syndrome
Amyloidosis
and palmoplantar keratoderma syndrome
Andrew Talbot
Androgen Insensitivity Syndrome
Angelman Syndrome
Aniridia
Anna Hackett
Antonia Milner
Apert Syndrome
Aron Chakera
Arthrogryposis
Aspergers
Asthma
Ataxia
Ataxia-telangiectasia
Atypical Haemolytic Uraemic Syndrome
Autism
Band heterotopia
Barth Syndrome
Bartter Syndrome
Batten disease
Beckwith Wiedemann Syndrome
Bertolotti's Syndrome
Beta-Mannosidosis
Bloom Syndrome
book.com/vcfs22q11/"
Börjeson-Forssman-Lehmann syndrome
Brain Cancer
BRCA Mutation
Breast and Ovarian cancer
Brett Zani
Brian Fisher
Bruce Tonge
CACNA1A
Cancer
Cap Myopathy
Cardio-Facio-Cutaneous Syndrome
Cardiomyopathy
Carey-Fineman-Ziter syndrome
Cataract Kids Australia
Cauda Equina Syndrome
Cerebellar hypoplasia
Cerebral dysgenesis
Cerebreal Palsy
Charcot-Marie-Tooth
CHARGE Syndrome
Cholestasis
Choreoacanthocytosis
Christine Walker xine@spin.net.au or cwalker@chronicillness.org.au
Chromosome 15q Duplication Syndrome
Chromosome 18 Conditions i.e. 18p- ; 18q- ; Tetrasomy 18p ; Ring 18 ; Trisomy 18 ; and Pitt Hopkins Syndrome
Chronic Granulomatous Disorder
Cleft Palate
Cockayne Syndrome
Coeliac Disease
Coffin-Lowry Syndrome
Coffin-Siris Syndrome
Cohen Syndrome
Condition 10q22.3q23.2 deletion syndrome 1q21.1 microdeletion 22q11.2 Deletion Syndrome
Condition 22q11.2 Deletion Syndrome DiGeorge Syndrome Wolf Hirschhorn Syndrome Congenital Analgesia Achromatopsia Acoustic Neuroma Acoustic Neuroma
Cone-rod synaptic disorder
congenital
Congenital adrenal hyperplasia
Congenital Analgesia
Congenital Diaphragmatic Hernia
Congenital Disorders of Glycosylation
Congenital Heart Disease
Congenital Hyperinsulinism
Congenital Melanocytic Naevus
congenital nonprogressive
Congenital short bowel syndrome
COO
Cornelia de Lange Syndrome
Creutzfeldt-Jakob Disease
Cri Du Chat Syndrome
Crisponi Syndrome
Crouzon Syndrome
Cryoglobulinemia
Cushing's Disease
Cystic Fibrosis
Cystinosis
d "
D-bifunctional protein deficiency
Dalal Baumgartner
Daman Langguth
Dandy-Walker Syndrome
DAVID A MACKEY
David Szmulewicz
Dementia
Dent disease
Dercurm's
DiGeorge Syndrome
Douglas Crawford
Down Syndrome
Dr Catherine Franklin
Dr Jacqueline Hewitt
Duane Syndrome
Dwarfism
Dyskeratosis congenita
Dystonia
Ectodermal Dysplasia
Eden Robertson
Ehlers-Danlos Syndrome
Eosinophilic Oesophagitis (EoE)
Epidermolysis Bullosa
Epilepsy
Epithelioid hemangioendothelioma
Erdheim-Chester Disease
Erythropoietic Protoporphyria
Fabry Disease
Facioscapulohumeral muscular dystrophy
Familial dysautonomia
Familial Hypercholesterolaemia
Familial Mediterranean Fever
Fanconi Anaemia
Fibrodysplasia Ossificans Progressiva
Fibromuscular Dysplasia
Fibromyalgia
Foetal Anti-Covulsant Syndrome
FoxG1 Syndrome
FOXP1 Syndrome
Fragile X Syndrome
Friedreich Ataxia
Galactosaemia
Gaucher Disease
Gaucher Disease Type 3
Gelastic Seizure
Generalized Arterial Calcification of Infancy
Genetic Cancer
genital insensitivity to pain
Glass Syndrome
Glaucoma
Glycogen Storage Disease
GM2 Gangliosidosis Type 2
Goldenhar Syndrome
Gorlin Syndrome
GRIN disorder
GRIN2B related disorder
Guillain Barre Syndrome
Haemophilia
Hand abnormalities
Hannelie Dargie Klippel Trenauny
Harlequin Ichthyosis
Hemiconvulsion Hemiplegia
Hemolytic disease of the fetus and newborn
Hereditary Angioedema
Hereditary haemochromatosis
Hereditary hemorrhagic telangiectasia
Hereditary Spastic Paraplegia
Hirschsprung Disease
Histiocytosis-lymphadenopathy plus syndrome
Homocystinuria
Huntington's Disease
Hydrocephalus
Hyperekplexia
Hypermobility
Hyperoxaluria
Hypokalemic periodic paralysis
Hypoparathyroidism
Hypoplastic Left Heart Syndrome
ichthyosis
Idiopathic CD4+ lymphocytopenia
Idiopathic Hypersomnia
Idiopathic Intracranial Hypertension
Idiopathic Thrombocytopenia Purpura
ility multiple congenital abnormalities plus intellectual disability"
ility"
Imperforate Anus/Anorectal Malformation
Incontinentia Pigmenti
Inflammatory Bowel Disease
Intellectual Disability
intellectual disability syndromes with intellectual disability"
ities Multiple congenital abnormalities plus intellectual disability multiple congenital abnormalities plus intellectual disability"
ity to pain
Jacqui Russell
Jade Cross
Jamie Watson Fibrous Dysplasia Support Society UK (FDSSUK)
Joan Godber Pulmonary hypertension Association Australia - PHA Australia
John Christodoulou
Joubert Syndrome
Jozef Gecz
Kabuki Sydrome
Kabuki Syndrome
Kawasaki Disease
KBG Syndrome
Kennedy's disease
Kidney Failure
KIF1A-Related Disorder
Klinefelters Syndrome
Klippel Trenaunay
Klippel-Feil Syndrome
Kristin Sinclair The Australasian Mastocytosis Society (TAMS)
l insensitivity to pain
Legg-Calvé-Perthes Disease
Leo Donnan
Lewis Kaplan Huntington's NSW ACT
Li-Fraumeni Syndrome
Lichen Sclerosis
Limb Losses
lipedema and rare adipose tissue diseases (RAD's)
Lipoedemia
Lissencephaly
Loeys-Dietz syndrome
Long QT Syndrome
Lowe Syndrome
Lupus
Lymphangioleiomyomatosis
Lymphoedema
Lymphoproliferative syndrome
Lyndon Gallacher
Lysosomal Acid Lipase Deficiency (LAL-D)
Lysosomal Diseases
Machado-Joseph Disease
Madelyn Gillentine
Mal de Debarquement Syndrome
Marfan Syndrome
Marinesco-Sjogren Syndrome
Mark Walterfang
Mast Cell Activation Disorders
Mastocytosis
Mayer-Rokitansky-Kuster-Hauser Syndrome
McCune-Albright Syndrome
MECP2 duplication syndrome
Megan Prictor
Melanoma
MEN2A
Meniere’s disease
Menkes Disease
mes with multiple abnormalities
Mesothelioma
Metachromatic Leukodystrophy
Michelle Raymond; People with multiple sclerosis Victoria
Microvillus inclusion disease
Miller Syndrome
Miriam Rodrigues
Mito Foundation
Mitochondrial disease
Motor Neurone Disease
Mowat-Wilson Syndrome
Moyamoya Disease
Mucopolysaccharidoses
Multiple Sclerosis
Muscular Dystrophy
Myalgic Encephalomyelitis
Myasthenia
Myeloproliferative Neoplasms
Myositis
Name
Natasha Brown
ne VIC
Neurofibromatosis
Neurological Conditions
Neuromuscular Disease
neuropathy
Nicolaides Baraitser Syndrome
Nicole Bester
Niemann Pick Disease
Niemann-Pick Type C
Nigel Caswell
Noonan Syndrome
Norrie disease
nsensitivity to pain
Oculodentodigital Syndrome
Ohdo Syndrome
Oligophrenin-1 Syndrome
ongenital insensitivity to pain
Osteogenesis Imperfecta
Pallister-Hall Syndrome
Pallister-Killian Syndrome
Parkinson's disease
Paroxysmal Nocturnal Haemoglobinuria
Pelizaeus-merzbacher disease
Peters anomaly
Phelan-McDermid Syndrome
Phenylketonuria
Pierre Robin Sequence
Pitt-Hopkins Syndrome
Polycystic Kidney Disease
Polymicrogyria
Pompe Disease
Pontocerebellar hypoplasia
Poretti-Boltshauser syndrome
Porphyria
posterior column
Potocki-Shaffer syndrome
Prader-Willi Syndrome
President Osteogenesis imperfects Society of Australia
Primary & Secondary Immune Deficiencies
Primary adrenal insufficency
Primary Ciliary Dyskinesia
Primary Orthostatic Tremor
Primary sclerosing cholangitis
progressive familial intrahepatic
Progressive familial intrahepatic cholestasis
Progressive Supranuclear Palsy
PRUNE 1
Pseudohypoaldosteronism
Pseudomyxoma peritonei
Pseudoxanthoma Elasticum
Pulmonary Hypertension
Pyruvate kinase deficiency
Relapsing Polychondritis
Retinitis Pigmentosa
Retroperitoneal Fibrosis
Rett Syndrome
Rhizomelic Chondrodysplasia punctata
Riboflavin Transporter Deficiency
Rothmund-Thomson syndrome
Rubinstein-Taybi Syndrome
Ruth Lindsay Children's Tumour Foundation
Salla Disease
Samuel Lam Thalassaemia and Sickle Cell Australia
Sanfilippo Syndrome
Sarcoidosis
SATB2/Glass Syndrome
SCA6
Schizencephaly
Scleroderma
SCN2A
Segawa syndrome
severe
Sherelle Fyfe Friedreich Ataxia Research Association
Sherri Marshall
Shwachman-Diamond Syndrome
Sickle Cell Disease
Sjogren's Syndrome
Sleep Disorders
Sly syndrome
Smith-Lemli-Opitz Syndrome
Smith-Magenis Syndrome
Sotos syndrome
Spina Bifida
Spinal Muscular Atrophy
Spinocerebellar Ataxia
Stickler syndrome
Sturge-Weber Syndrome
Sub-Category Multiple congenital abnormalities Multiple congenital abnormalities plus intellectual disability multiple congenital abnormalities plus intellectual disability"
Superior Oblique Myokymia
swan
Synder-Robinson Syndrome
Syndromes with multiple abnormalities
Syringomyelia
Tara Apperley Ehlers-Danlos Syndromes New Zealand
Tarlov Cyst Disease
TBC1D24-related disorders
Telephone "
tellectual disability multiple congenital abnormalities plus intellectual disability"
Thalassaemia
The Sturge-Weber Foundation
Thrombotic thrombocytopenic purpura
tion Australia & New Zealand "
tivity to pain
Toni Catton
Tourette Syndrome
Trifunctional protein deficiency
Trigeminal Neuralgia
Triple X Syndrome
Trisomy 18
Trisomy 9 Mosaic
tual disability"
Tuberous Sclerosis
Turner Syndrome
ty to pain
Type 1 Diabetes
Tyrosinemia
ultiple congenital abnormalities Multiple congenital abnormalities plus intellectual disability multiple congenital abnormalities plus intellectual disability"
Usher Syndrome
VACTERYL Association
Victoria Bowring
Von Hippel-Lindau disease
William Stevenson
Williams Syndrome
Wilson Disease
Wiskott-Aldrich syndrome
with intellectual disability"
with retinitis pigmentosa
Wolf Hirschhorn Syndrome
Wolfram Syndrome
X-linked Adrenoleukodystrophy
X-linked hypophosphatemia
Xeroderma Pigmentosum
XYY
Would you like to be listed in our directory?
Click here to register
CACNA1A
Supporting: CACNA1A
Get in touch
Lisa Manaster-President
info@cacna1a.org/ australia@cacna1a.org
Website
Facebook
Facebook Group
Australian X and Y Spectrum Support (AXYS)
Supporting: XYY
Get in touch
0412 038 142
Website
Facebook
Facebook Group
XLH Australia
Supporting: X-linked hypophosphatemia
Get in touch
xlhaustralia@gmail.com
Website
Facebook
Facebook Group
The Wolf Pack Foundation
Supporting: Wolfram Syndrome
Get in touch
0413 556 227
contact@wolframsyndromeaustralia.org.au
Website
Facebook
Facebook Group
Australasian Wolf Hirschhorn Syndrome Support Group
Supporting: Wolf Hirschhorn Syndrome
Get in touch
whs-aust@hotmail.com
Website
Facebook
Facebook Group
4P Aussie Kidz
Supporting: Wolf Hirschhorn Syndrome
Get in touch
Melissa Young - President
(03) 8502 7745; 0413 287 044
4paussiekidz@gmail.com
73 Howard Rd Dingley Village VIC 3172 Australia
Website
Facebook
Facebook Group
Wiskott-Aldrich Foundation
Supporting: Wiskott-Aldrich syndrome
Get in touch
info@wiskott.org
4480 South Cobb Drive, Ste H, PMB 223, Smyrna, GA 30080-6989, USA
Website
Facebook
Facebook Group
Wilson Disease Association
Supporting: Wilson Disease
Get in touch
Jean Perog - president
414-961-0533
info@wilsonsdisease.org
Website
Facebook
Facebook Group
Williams Syndrome Family Support Group
Supporting: Williams Syndrome
Get in touch
Evan Englezos - President
0415 138 788
info@wsfsgvic.org.au
50 Eliza St Black Rock, VIC 3193 Australia
Website
Facebook
Facebook Group
Williams Syndrome Australia
Supporting: Williams Syndrome
Get in touch
Dianne Petrie - Director
0439 431 256
info@williamssyndrome.org.au
21/6 Malabar Road, Coogee, NSW, 2034
Website
Facebook
Facebook Group
Williams Syndrome Association of Western Australia
Supporting: Williams Syndrome
Get in touch
0408 913 348 (Anthony); 0417 946 007 (Misty)
wsawa@wsawa.org
Website
Facebook
Facebook Group
Williams Syndrome Association of South Australia
Supporting: Williams Syndrome
Get in touch
(08) 7329 5409; 0424 787 966
wsaofsa@adam.com.au
Website
Facebook
Facebook Group
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