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Making the right connections since 1988

Genetic Alliance Australia is a peak umbrella group for rare genetic conditions/diseases, so rare they do not have their own support group.

Genetic Alliance Staff

Emma Bonser

Chief Executive Officer

Emma has 18 years of diverse experience in health communication, strategy, digital health innovation, policy and advocacy within the life sciences and more recently the NFP sector. In all areas of her work she is driven by the courage and resilience of her family members living with rare conditions. With over 25 years as an informal carer and advocate for a family member living a complex health condition she has deep compassion and admiration for the rare community.

Drawing from this lived experience, she has worked in rare disease for over eight years, most recently leading the Rare Disease Gene Therapy business for a multinational life sciences company across South Korea and ANZ. She has previously been a member of Rare Voices Australia (RVA) and Rare Disorders New Zealand (RDNZ) Round Table of Companies, the Cell and Gene Therapy Catalyst Consortium and the Industry Genomics Network Alliance (InGeNA).

Currently pursuing a Master’s in Public Health focused on Global Health, Emma is interested in the overlap of rare genetic diseases, health equity, and technology. She has previously launched a telehealth start-up, mentored within a digital health incubator and delivered a telehealth strategy in Cambodia aimed at reducing health inequity in rural provinces.

Genetic Alliance Board Members

Nicholette Conway

Board Chair

Nicholette is passionate about 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, Medical Devices and Diagnostic industries leading clinical research, product development, health technology assessment 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 development.

Kathleen Le Marquand

Deputy Chair and Interim Secretary

I am passionate about providing an equitable and supportive genetic service to families affected by genetic disease. I am a certified genetic counsellor with many years of experience in both general and prenatal genetics in the public and private industries. I have a keen interest in women’s health and prenatal genetics. I have worked in several hospitals across the Sydney network, with the majority of my time at Liverpool and Royal Prince Alfred Hospital working with a diverse multicultural population. I have had the opportunity to work and manage a Fetal Medicine and Genetic clinic in Dubai, UAE for 5 years. I enjoy teaching on a casual basis for the UTS Genetic Counselling Masters course and supervising students on their clinical placements. I am currently the Chair of the NSW Genetic Counsellor Advisory Network and the Chair of the Professional Concerns and Complaints committee for genetic counsellors in Australasia.

Lizzy Harnett

Board Member and Executive Director AWCH

Lizzy is the Executive Director for the Association for the Wellbeing of Children in Healthcare (AWCH). AWCH is a national NFP organisation of consumers and health professionals advocating for the wellbeing of children, young people and their families in healthcare.
Lizzy has a B.App.Sc (Physiotherapy) and has worked as a children’s physiotherapist in the acute, community and school based settings. In 2001, Lizzy moved from Director of Physiotherapy into health management and established the Clinical Governance Unit (CGU) at The Children’s Hospital at Westmead (CHW) where she continued as Director of the CGU until late 2013. Lizzy has a passion for partnering with consumers in improving healthcare and is on a number of state and national committees focussing on the wellbeing of children and young people.

Dr Laura Yeats

Board Member

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.

Anastasia Ioannou

Board Member

Anastasia is a seasoned executive with extensive experience across the public, corporate, and nonprofit sectors. She has a proven track record in the health sector, medical research, aged care, and disability services. In her current role as Executive Director and Company Secretary of Luminesce Alliance, Anastasia leads with a collaborative and inclusive approach, working closely with partners, stakeholders, and the wider community. She plays a key role in driving innovative and translational research to advance prevention, treatment, and cures for children affected by rare diseases, cancer, and neurodevelopmental disorders. Furthermore, she oversees the organisation's operations, governance, advocacy, and policy initiatives, ensuring they align with the organisation's mission and strategic objectives. Anastasia holds a background in biomedical science, along with a Master of Health Administration. She is also a Graduate of the Australian Institute of Company Directors. Directorships Non-Executive Director – Proveda Non-Executive Director – Genetic Alliance Australia

Richard Pearson

Treasurer

Mairead Cusack

Board Member

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.

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ABN  83 594 113 193  |  ACN 168918625  |   Registered Charity CFN  15481

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