Call Us: +61 2 9295 8359
Follow Us:

Our team

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

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.

Laura Cowell

Board Secretary

Laura is a collaborative executive leader with extensive experience in Project Management, Business Operations and General / Strategic Management across corporate and not-for-profit sectors.
With a proven record of achieving exceptional business results, building high performance teams, creating business strategies, and achieving revenue and growth targets. Laura draw on her skills in executive leadership, coaching and mentoring business operations, strategic planning, financial process improvement and change management to collaborate with internal and external stakeholders and establish positive, transparent working relationships. Laura has been diagnosed with FDMAS & is the Director of Fibrous Dysplasia McCune Albright Syndrome Australia whose goal is to raise awareness, improve support & care pathways for people living with a disability.

Alberto Piccenna

Board Treasurer

Alberto is approaching 20 years’ experience in the Financial Services sector, specialising in Insurance.
Alberto has worked in Europe, the UK and since 2011, Australia.
Currently Alberto is a Client Director for an international brokerage firm and has been directly involved in the design, review and evaluation of Insurance programs for different types of companies, including non-for-profits as well as multinational, publicly listed entities, working across different segments such as medical, education and IT. Alberto holds a Bachelor’s of Economics, with majors in Insurance and Risk Management.
Alberto is a proud father of 2 girls, one with a rare genetic condition.

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.

Beth Ferlazzo

Board Member

Beth is a passionate advocate of patient led support groups. As the current President (volunteer) at ozED - Australian Ectodermal Dysplasia Support Group, Beth raises awareness and provides support to individuals and families living with Ectodermal Dysplasia.

During 2023 Beth represented ozED and the Australian Rare community at 2 international conferences building connections with leaders and researchers.

Professionally, Beth has extensive experience as an Executive Assistant providing support to executives across a number of industries. Beth also holds a Mental Health First Aid certificate.

As a person with a rare genetic condition, Beth understands the challenges faced by those who are different and the importance of resilience and determination required to thrive in life! Beth brings her knowledge, experience and positive attitude to all that she does.

make a donation
Help Support Genetic Alliance Australia

Click on Bert, the Genetic Alliance Frog - to make a donation. All donations over $2 are tax deductible.
ABN  83 594 113 193  |  ACN 168918625  |   Registered Charity CFN  15481

We are members of
Supported by
Quick Links
Contact Us

Level 6
384 Victoria Street
Darlinghurst ,  NSW   2010

Connect with us
Registered Charity
© 2021 Genetic Alliance Australia. All right reserved.   |   Disclaimer & Privacy Policy
+61 2 9295 8359