Rare Diseases NSW Committee

Prof Adam Jaffe

Chair; Head, Randwick Clinical Campus & John Beveridge Professor of Paediatrics, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney; Consultant, Respiratory Medicine, SCHN; Co-Chair, Translational Research Working Group, RHIP.

A/Prof Susan Adams

Staff Specialist Paediatric Surgeon, SCHN; Conjoint Associate Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Dr Kaustuv Bhattacharya

Senior Lecturer, Paediatrics & Child Health, Faculty of Medicine & Health, USYD; Staff Specialist Genetic Metabolic Disorders, SCHN; Conjoint Assocaite Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

Dr Paula Bray

Director of Research, SCHN

Dr Michael Cardamone

Senior Staff Specialist & Paediatric Neurologist, SCHN; Conjoint Senior Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Dr Sandra Chuang

Respiratory Paediatrician, SCHN; Senior Lecturer, School of Clinical Medicine, UNSW Sydney.

A/Prof Mark Crowley

Associate Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney; Luminesce Alliance Data Enabling Platform Co-Leader; President Australasian Genomic Technologies Association (AGTA).

Dr Lisa Ewans

Clinical Geneticist, Staff Specialist, SCHN; Rare Disease Program, Garvan Institute of Medical Research.

Dr Lisa Ewans

Staff Specialist, Clinical Geneticist, SCHN; Rare Disease Program, Garvan Institute of Medical Research; Conjoint Senior Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

Dr Joanna Fardell

Senior Research Fellow, SPHERE Cancer Clinical Academic Group. Deputy Director Behavioural Sciences Unit, Sydney Children's Hospital

Ms Eleanor Farley

Rare Disease Clinical Nurse Specialist, SCHN.

Prof Michelle Farrar

Staff Specialist Paediatric Neurologist, SCHN; Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Mr Michael Ferraro

Trial Coordinator, Neuroscience Research Australia; PhD Candidate, UNSW Sydney.

Dr Lydia Garside

Staff Specialist Paediatrics, SCHN

Prof Nick Di Girolamo

Head, Ocular diseases Research & Head, Mechanism of Disease and Translational Research, School of Biomedical Sciences, Faculty of Medicine & Health, UNSW Sydney.

Prof David Goldstein

Senior Staff Specialist, Medical Oncology, POWH; Director, Translational Cancer Research Network, & Conjoint Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Dr Paul Gray

Staff Specialist Paediatric Immunologist, SCHN

Dr Kate Hetherington

Post-doctoral Research Fellow/Clinical Psychologist, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney; Behavioural Sciences Unit, Kids Cancer Centre, SCHN.

A/Prof Jodie Ingles

Head, Clinical Genomics Laboratory, Garvan Institute of Medical Research; Caridac Genetic Counsellor, Royal Prince Alfred Hospital

Dr Didu Kariyawasam

Post-Doctoral Researcher, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney; Staff Specialist Paediatric Neurologist, SCHN

Prof Arun Krishnan

Neurologist, Prince of Wales Hospital, Sydney; Head of Research, Randwick Clinical Campus; Postgraduate Co-ordinator, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney

A/Prof Usha Krishnan

Staff Specialist Paedaitric Gastroenterologist, SCHN; Conjoint Associate Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

Dr Christina Liang

Staff Specialist in Neurology, SESLHD; Honorary Research Fellow, Neuroscience Research Australia.

Dr Marion Mateos

Staff Specialist Paediatric Haemotologist/Oncologist, SCHN; Senior Research Associate, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

Ms Samantha (Sam) McFedries

Translational Research Lead, Randwick Health & Innovation Precinct.

Dr Lauren McKnight

Postdoctoral Fellow, Evaluation lead, RArEST, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Dr Ernest Moles

Senior Research Officer, Children's Cancer Institute; Conjoint Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

A/Prof Albert S Mellick

Associate Professor, Medical Oncology & Research Group Leader, Ingham Institute for Applied Medical Research.

Dr Louisa Owens

Paediatric Respiratory Specialist and Head of Respiratory Department at SCH Randwick; Conjoint Senior Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

Dr Elizabeth (Emma) Palmer

Staff Specialist Clinical Geneticist, SCHN; Senior Clinical Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Dr Joshua Peterson

Chief Operating Officer, RNA Institute, UNSW.

Dr Jason Roderick Pinner

Clinical Geneticist, Staff Specialist, SCHN; Conjoint Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Ms Rebecca Saad

Clinical Nurse Consultant; SCHN

Dr Ursula Sanson-Daly

Senior Research Fellow, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney; Director, Behavioural Sciences Unit, Kids Cancer Centre, SCHN.

A/Prof Tim Schindler

Senior Staff Specialist, Neonatology, RHW; Conjoint Associate Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Ms Concetta Severino

Database Assistant/ Clinical Studies Coordinator, Neuroscience Research Australia.

A/Prof Owen Siggs

Co-Lead, Rare Disease Program, Garvan Institute of Medical Research

Prof Carolyn Sue

Kinghorn Chair, Neurodegenration, NeuRA

Dr Artiene Tatian

Staff Specialist Paediatric Dermatologist, SCHN; Conjoint Senior Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

Dr Toby Trahair

Staff Specialist Paediatric Haemotologist/Oncologist, SCHN; Conjoint Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

A/Prof Orazio Vittorio

Scientia Associate Professor, School of Biomedical Science, Faculty of Medicine & Health, UNSW Sydney; Team Leader, Metal-Targeted Therapy and Immunology, CCI.

Dr Judith Walker

Post-Doctoral Fellow, NeuRA; Conjoint Associate Lecturer, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney

Ms Yvette Walker

Consumer. Parent of children living with a rare disease.

A/Prof Orli Wargon

Staff Specialist Dermatologist, SCHN; Conjoint Associate Professor, School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney.

Dr Shafagh Waters

Scientia Senior Lecturer, School of Biomedical Science, Faculty of Medicine & Health, UNSW Sydney; honorary Senior Scientist, SCHN.

Prof Alec Welsh

Professor Maternal-Fetal Medicine, School of Clinical Medicine, Faculty Medicine & Health, UNSW Sydney.

Ms Prue Lynch

Committee Secretary; Clinical Campus Administrator and Executive Assistant to Head Randwick Clinical Campus UNSW

Ms Renae Ahern

Committee Secretary; Project Officer and Executive Assistant to Executive Director RHIP