We are a small, part-time team with a shared purpose. We work directly with individuals, families and carers and our rare genetic and undiagnosed advocacy organisation partners. Our work is supported by an incredible board, advisors and volunteers who generously share their time and expertise.
Our volunteer Board combines lived experience with expertise in genetic counselling, advocacy, health economics, clinical governance, research, policy, finance and law. They strengthen GAA’s work across the rare community and guide our priorities and strategic direction.
Emma Bonser is CEO of Genetic Alliance Australia. She centres lived experience in GAA’s work, partnering so people affected by rare, genetic and undiagnosed conditions (including those without formal representation) shape research, funding and care.
Her focus is practical: clear information, workable referral pathways and a community to lean on – then turning frontline insight into evidence to close system gaps.
Emma brings 18 years’ experience across health promotion, commercial strategy and digital health in Australia, New Zealand and Asia, including leadership in rare disease, gene-therapy access and digital innovation. A long-term family caregiver and advocate, she works to ensure support is reliable today and more equitable over time.
Victoria Warn holds a Bachelor of Medical Science and a Master of Genetic Counselling, with a strong background in clinical genetics, research, and patient advocacy.
Victoria began her professional journey as a research intern at the Garvan Institute of Medical Research, where she worked in the RNA Biology and Neuroscience Division. There, she contributed to research exploring the molecular mechanisms of neurological disorders, sparking her interest in the clinical application of genetics.
Victoria has worked as a Genetic Counsellor in the Clinical Genetics Department at Liverpool Hospital, and currently works in the General Genetics Department at Royal North Shore Hospital, providing genetic counselling to individuals and families undergoing diagnostic assessment and genetic testing.
In addition to her clinical roles, Victoria also serves as a Genetic Health Navigator at Genetic Alliance Australia, supporting individuals affected by rare and genetic conditions. She helps connect patients with reliable information, appropriate services, and supportive community networks. Victoria is passionate about equitable access to genetic healthcare and continues to advocate for patient-centred care through both her clinical and community-based work.
Rachel holds a Bachelor of Advanced Science (Honours) and a Master of Genetic Counselling, with a strong background supporting individuals and families affected by genetic and rare conditions.
Rachel began her career in a biochemistry research laboratory before quickly discovering she preferred working with people rather than bacteria. She has since worked across public hospital genetics services in NSW, including Liverpool Hospital and Royal Prince Alfred Hospital, and currently works as an Associate Genetic Counsellor alongside Victoria in the General Genetics team at Royal North Shore Hospital, where she is heavily involved in the neurofibromatosis and genetic cardiomyopathy clinics.
Through this work, Rachel has seen first-hand the barriers families face before, during, and after a genetic or rare diagnosis, fuelling her passion for making genetic information and support more accessible.
She has recently joined our team as a Genetic Health Navigator, helping families navigate the health system and connect with targeted supports.
Clare is passionate about reducing inequity by improving health, disability and social support for Australians living with rare genetic conditions. Her passion is fuelled by her experience as a sister of someone with tuberous sclerosis, complex epilepsy and intellectual disabilities. Her current focus is mitochondrial disease, through her role as Advocacy and Engagement Manager at Mito Foundation. Clare has also worked in areas relating to dementia, aged health, mental health and tuberous sclerosis. Clare has experience across a variety of roles in corporate, not for profit and government including project management, strategy, policy and service delivery.
Clare brings her experience with community engagement, collaboration and evidence-based programs to GAA. She has been involved in GAA for many years and works with us particularly on policy and engagement projects.
Dr Laura Yeates PhD is a cardiac Genetic Counsellor with more than 18 years’ experience. She completed her Genetic Counsellor Certification in 2014 and was recently awarded her PhD in cardiac genetic counselling under the supervision of A/Prof Jodie Ingles at the Garvan Institute of Medical Research, Sydney, Australia.
Laura continues to work clinically and in research, using both qualitative and quantitative research methods to better understand the psychosocial impact of genetic heart disease on the patient including working with families after sudden cardiac arrest/ death.
Richard brings extensive global expertise to Genetic Alliance Australia, having worked across the United Kingdom, South Africa, and Australia throughout his career. With a strong background in financial services, Richard specialises in finance and treasury.
As a board member, Richard is focused on enhancing financial stability and operational effectiveness, ensuring that the organisation continues to provide vital assistance to individuals and families impacted by rare diseases.
Richard is a Fellow of the Institute of Chartered Accountants in England & Wales and holds degrees in civil engineering from Liverpool University.
Mairead is a lawyer with almost 20 years’ experience in the legal industry.
Mairead advises clients across a number of areas, and represents clients in the courts and through alternative forms of dispute resolution.
Mairead facilitates and delivers education sessions for colleagues and clients. She regularly presents to the industry and she is recognised for her knowledge and technical, commercial and strategic analysis of the latest legislation reforms and judicial developments affecting the industry.
Having lived and worked in Ireland, New Zealand, and Australia, she has first-hand experience of alternative healthcare systems, and is an advocate for equal access to healthcare and associated support services particularly for the under-represented.
Lizzy joined the Association for the Wellbeing of Children in Healthcare (AWCH) as their CEO in 2016. AWCH is a national NFP who have been advocating for the wellbeing of children, young people and their families in healthcare for over 50 years. She is a Director on both the Health Consumers NSW and Genetic Alliance Australia Boards and is on many state and national committees focussing on consumer engagement, healthcare improvement and the wellbeing of children, young people and their families in the healthcare system.
Lizzy has a BAppSc (Physiotherapy) and after working as a physiotherapist moved into health management, establishing the Clinical Governance Unit at The Children’s Hospital at Westmead in 2001, and continued as Director of the CGU for 13 years before joining AWCH
Lizzy has extensive governance experience and a passion and expertise for improving healthcare through partnering with consumers and in particular ensuring the voices of children and young people are heard and utilised to improve the healthcare experience.
Sarah is a clinical geneticist and clinician-researcher, with over 20 years clinical experience as a doctor. Her clinical role as a senior staff specialist encompasses a range of subspecialty genetics clinics. She holds a PhD from the University of Sydney and related to this, has skills in interpretation of genomic data, novel disease-gene association and health economic analysis. Sarah is a fellow of the Royal Australasian College of Physicians and the Human Genetics Society of Australasia. She was site lead for the Australian Genomics Health Alliance, and was NSW lead for the MRFF-funded Acute Care Genomics Research project.
Sarah maintains consistent and impactful research output across a broad range of rare disorders. Her research has informed policy and practice guidelines. Sarah plays an active role in teaching and supervision of junior medical staff, medical students and genetic counsellors. She is passionate about clinical genetics, as is evident in her clinical work, involvement in research and teaching, and interactions with staff, families and patients.
Nicholette was a member of the Genetic Alliance Board from 2019 – 2026 and Chair for 5 years. She has been an active volunteer and partner with patient support and advocacy groups since 2004, predominantly in rare disease and oncology related disorders.
Nicholette is committed to accelerating patient access to life changing treatments and improving health outcomes through strategic and collaborative work across the healthcare system and medical and technology industries. Nicholette works in the Pharmaceutical, MedTech ( Medical Devices and Diagnostic) industries leading clinical and product development, health technology assessment, market access and commercialisation activities. Central to her work is building and maintaining a workforce capable of delivering new medical technologies and the inclusion of the patient and carers perspective and needs in product innovation and implementation.
Kathleen Le Marquand is passionate about providing equitable and supportive genetic services to families affected by genetic disease. She is a certified genetic counsellor with extensive experience in both general and prenatal genetics across public and private sectors. Kathleen has worked in several hospitals within the Sydney network, spending the majority of her time at Liverpool and Royal Prince Alfred Hospitals, serving a diverse multicultural population. Kathleen also spent five years in Dubai, UAE, where she worked in and managed a Fetal Medicine and Genetic clinic. She enjoys teaching casually in the UTS Genetic Counselling Masters course and supervising students during their clinical placements.
She currently serves as Chair of the Professional Issues for Genetic Counsellor and Chair of the Professional Concerns and Complaints Committee for genetic counsellors in Australasia.
Kathleen generously provides clinical supervision for GAA’s Genetic Health Navigator.
