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Understanding Unconscious Bias: Creating a Safe Space for Support 18 JULY 2024
October Practical Wellness Month 2023
Rare Disease Day 2023
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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
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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
Understanding Unconscious Bias: Creating a Safe Space for Support 18 JULY 2024
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
Pathways Specialist Nurse
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
Annual Report 2023
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
Understanding Unconscious Bias: Creating a Safe Space for Support 18 JULY 2024
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
Pathways Specialist Nurse
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
Annual Report 2023
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
Understanding Unconscious Bias: Creating a Safe Space for Support 18 JULY 2024
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
Pathways Specialist Nurse
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
Annual Report 2023
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 Rare Disease Health Professionals
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Antonia Milner
Paediatrician
Vmo
randwickpaeds@internode.on.net
(02) 93264333
Sydney Childrens hospital
Areas of Special Interest
Children
David Szmulewicz
Neurologist & medical researcher
Neurologist & medical researcher
david.szmulewicz@neurologyvictoria.com.au
(03) 90174001
Royal Victorian Eye & Ear Hospital and Florey Institute of Neurosciences & Mental Health
Areas of Special Interest
adult
cerebellar ataxia
William Stevenson
Haematologist
Molecular Haematology and Cytogenetic Laboratories RNSH
william.stevenson@health.nsw.gov.au
02 99267111
Royal North Shore Hospital
Areas of Special Interest
adult
Platelets / Thrombocytopenia
Anna Hackett
Clinical Genetics
Geneticist
anna.hackett@health.nsw.gov.au
4.07E+08
Hunter Genetics
Areas of Special Interest
both
intellectual disability
autism
Jozef Gecz
human geneticist
Head Neurogenetics
jozef.gecz@adelaide.edu.au
61 8 8313 2453
The University of Adelaide
Areas of Special Interest
children
cerebral palsy
intellectual disability
Dr Jacqueline Hewitt
Medical doctor and researcher
Paediatric endocrinologist
reception@cpmgmelbourne.com.au
03 9345 6688
Monash Children's Hospital, Monash University
Areas of Special Interest
Children and young adults
Developmental variations of sex characteristics
Differences/disorders of sex development
Andrew Talbot
Medical Specialist
Nephrologist
andrew.talbot@mh.org.au
03 9342 7000
Western Health
Areas of Special Interest
Adult
Fabry Disease
Alport Syndrome
Daman Langguth
Doctor of Medicine
Director of immunology
daman_langguth@snp.com.au
7.34E+08
Wesley Immunology
Areas of Special Interest
Adult
Primary Immune deficiency
Vasculitis
Jacqui Russell
Nurse Practitioner/Genetic Counsellor
Genetic and Metabolic Nurse Practitioner
jacqui.russell@health.nsw.gov.au
02 93825608
Sydney Children's Hospital Randwick
Areas of Special Interest
Children
Inborrn errors of metabolism
Neuromuscular disorders
DAVID A MACKEY
Ophthalmologist
Professor of Ophthalmology
d.mackey@utas.edu.au
6.14E+10
University of Western Australia, Australia.
Areas of Special Interest
Adults and Children
Leber Hereditary Optic Neuropathy
Autosomal Dominant Optic Atrophy
Leo Donnan
Orthopaedics
Assoc Professor
leo.donnan@rch.org.au
03 93455522
Royal Children's Hospital Melbourne
Areas of Special Interest
Children
Musculoskeletal
John Christodoulou
clinical geneticist and genetic pathologist
Director, Genetics Research Theme
john.christodoulou@mcri.edu.au
3.99E+08
Murdoch Children's Research Institute
Areas of Special Interest
children
inborn errors of metabolism
Rett syndrome
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