Quick Search: Board of Directors Scientific and Medical Advisory Committee RVA Staff
Board of Directors
Rare Voices Australia’s (RVA) Board comprises dedicated and passionate people across Australia. A number of board members have a personal connection with a rare disease. The Board meets regularly and oversees RVA’s strategic direction and purpose.
Dr Tarun Weeramanthri AM
CHAIR, Rare Voices Australia (WA)
Tarun is a public health physician and experienced administrator. He serves on the Australian Institute of Health and Welfare Board, is deputy Chair of the PathWest Board, and recently completed a four-year term as President of the Public Health Association of Australia. As Chief Health Officer in Western Australia (WA) from 2008 to 2018, he oversaw the Office of Population Health Genomics, and the development of the first WA Rare Diseases Strategic Framework (2015-2018). He developed a strong appreciation of the importance of consumer, carer and civil society organisations in rare disease advocacy, and encouraged colleagues nationally and internationally to see rare diseases as an important public health issue. As a member of the RVA Board, he is looking forward to hearing directly the voices of people living with rare diseases, contributing to good governance, and promoting innovative rare disease policy. The ultimate goal being improved health care access, and a closing of the gap between research and better patient and carer experiences and outcomes.
Joanna Betteridge
Director, Rare Voices Australia (VIC)
Joanna Betteridge, Principal of Betteridge Legal Consulting, is an employment and workplace safety lawyer and consultant and an accredited mediator. Joanna is also a Senior Fellow at Monash University and lectures in its Law Faculty post graduate program including lecturing in anti-discrimination law. Joanna is the immediate past Chair of the TEAR Australia Board (a global aid and development organisation) and has held a number of Board roles in a variety of not-for-profit and Government Boards since 2003. Joanna sat for many years on the committee of the Australian MPS Society, becoming involved soon after her two nephews, Jack and Tom, were diagnosed with MPS III, Sanfilippo Syndrome, in 1998.
Andrew Carter
Director, Rare Voices Australia (VIC)
Andrew Carter is a seasoned business leader and company director with over 35 years of experience in the health technology industry. In 2001, he founded Commercial Eyes Pty Ltd, which grew under his leadership into the foremost health technology commercialisation firm in Australia and New Zealand. The company was acquired in 2023 by an international consulting firm. Andrew’s governance experience spans the private, NGO, and not-for-profit sectors. He currently serves as a Non-Executive Director for private businesses in medical communications and health technology manufacturing. Andrew has held Chair and Non-Executive Director roles in various industry and professional not-for-profit organisations, including ARCS Australia Ltd and BioMelbourne Network Inc. More recently, he has served on advisory boards for Medicines Australia Inc., Invest Melbourne, and the Master of Biotechnology program at the University of Melbourne. A strong advocate for social justice and education, Andrew is an active, hands-on volunteer and supports numerous community organisations. He is currently a Regional Councillor of Yalari, a national Indigenous education and leadership organisation and previous governance roles include Non-Executive Director and Chair of Melbourne City Mission Inc. and Councillor of Whitley College, University of Melbourne. Andrew holds a Bachelor of Science, a Graduate Diploma of Business, and a Master of Commercial Law.
Andre Carvalho
Director, Rare Voices Australia (VIC)
With over 25 years of senior executive experience in the United Kingdom and Australian not-for-profit sectors, Andre Carvalho currently serves as the Chief Executive Officer of CF Together, a national organisation dedicated to advancing progress for people living with cystic fibrosis (CF). Throughout his career, Andre has been dedicated to addressing complex challenges and driving impactful change, serving various causes, including mental health, bereavement, disability, and health and well-being. Andre's professional journey is informed by his lived experience with CF, providing him with a unique perspective for the CF and rare conditions communities. Andre also volunteers his time as a non-executive director at Lort Smith Animal Home, a role that allows him to apply his strategic vision and governance skills to support one of Australia’s most respected animal welfare organisations. Andre holds a Bachelor of Arts from London South Bank University and is a graduate of the Australian Institute of Company Directors (AICD) Company Directors Course™.
Roxane Marcelle-Shaw
Director, Rare Voices Australia (NSW)
Roxane has held a variety of executive roles and statutory appointments over 25 years in the Australian Capital Territory, Commonwealth and New South Wales public sectors. She was responsible for designing and delivering regulatory services, including in the health, disability, aged care, housing and professional services sectors. Roxane concluded her public service career in 2024 as Chief Executive Officer of the Professional Standards Authority, during which time, she also held additional roles as Chair of the New South Wales Chapter of the Australia and New Zealand School of Government (ANZSOG) auspiced National Regulators Community of Practice and as a statutory member of the Occupational Therapy Board of Australia. She now works as an advocate and independent adviser on regulatory practice and governance, risk management, professional standards and consumer protection. Roxane lives with a rare form of Ehlers-Danlos Syndrome, a connective tissue disorder causing severe fragility of her skin, blood vessels and organs, and joint instability.
Viswanathan Narayanaswamy (Vishy)
Director, Rare Voices Australia (NSW)
Viswanathan Narayanaswamy (Vishy) is a Chartered Accountant by profession with extensive experience in audit and accounting advisory for over 20 years in India and Australia. Vishy is a member of the Institute of Chartered Accountants of Australia and New Zealand and the Institute of Chartered Accountants of India. He is also a member of The Tax Institute and is a registered tax agent with the Tax Practitioners Board. He is currently working with PwC in their Accounting Consulting Services team. Vishy leads all of Rare Voices Australia’s (RVA) accounting, financial and tax-related matters and helps the RVA Board in complying with all regulatory requirements. Vishy was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) disease, a rare blood disorder, in 2008 and has been receiving treatment since. He is also a board member with Sydney Blood Cancer Research Institute, which provides laboratory and clinical research for haematology patients.
Teresa Pilbeam
Director, Rare Voices Australia (QLD)
Teresa Pilbeam is a special education teacher, an advocate for informal family carers and has worked alongside Aboriginal and Torres Strait Islander people across Australia. Teresa has 30 years’ experience in special education, contributed to carer and disability reform for over 10 years, is an independent director on government and profit-for-purpose state and federal councils and boards, and has a lived experience of autism spectrum and complex disability. Teresa brings experience and expertise of governance, ways of working with Aboriginal and Torres Strait Islander people, and an enthusiasm for enabling the voice of informal family carers to be heard in cross-sector conversations.Scientific and Medical Advisory Committee
RVA’s Scientific and Medical Advisory Committee (SMAC) provides the organisation with medical and clinical perspectives, guidelines and information as needed.
SMAC Terms of Reference (PDF)
Prof Adam Jaffé
CHAIR, UNSW/Sydney Children’s Hospital, Randwick, Respiratory Disorders, CF, Consumers, Clinicians & Clinical Trials (NHMRC) (NSW)
Professor Adam Jaffé is the John Beveridge Professor of Paediatrics and Head of the Discipline of Paediatrics and Child Health and Clinical Campus, Randwick School of Clinical Medicine, UNSW Medicine, and a Paediatric Respiratory Consultant at Sydney Children’s Hospital, Randwick. Professor Jaffé was appointed as Consultant in Paediatric Research at Great Ormond Street Hospital for Children and headed up respiratory medicine research at the Institute of Child Health London in 2001 until moving to Australia in 2006. Adam chairs the Young Lungs program of Lung Foundation Australia and is on Lung Foundation Australia’s Rare Lung Diseases Committee. He is chair of RVA’s Scientific and Medical Advisory Committee and is on the Board (ex officio). He is on the boards of Children’s Cancer Institute and the Australian Institute of Health Innovation. He is the Chair of the Research Advisory Committee of Asthma Australia. He was on the advisory committees for the National Strategic Plan for Lung Conditions (2019) and the National Strategic Action Plan for Rare Diseases (2020).
Clin/Prof Gareth Baynam
Rare Care Centre, Western Australian Register of Developmental Anomalies, GSWA, WADoH, Centres of Expertise, Phenotyping, Digital Health (WA)
Professor Gareth Baynam is the Medical Director of the Rare Care Centre and its state-wide clinical service based at the Perth Children’s Hospital; Head of the Western Australian Register of Developmental Anomalies (birth defects and cerebral palsy registers); Clinical Geneticist and Program Director of the Undiagnosed Diseases Program WA; Foundation Board Member of the Undiagnosed Diseases Network International; and Adjunct Genomics Policy Officer in the Western Australian Health Department. He is affiliated with the University of Western Australia; Curtin University; Murdoch University; Notre Dame University; Melbourne University; and Telethon Kids Institute. He is the founder of an integrated suite of cross-sector and community engaging initiatives to improve the lives of people living with rare diseases including Project Y, Cliniface (3D facial analysis for rare diseases diagnosis, clinical trials and device design) and Lyfe Languages (Universal Indigenous Medical Translator). He has partnered with the Aboriginal health care leaders and communities in WA over more than a decade to implement a range of state-wide initiatives to improve the equity for Indigenous people living with rare diseases. He Chairs and/or is one of the Executive or Advisories of multiple international rare diseases initiatives; and multiple National Institutes of Health in Europe, North America and Asia. He has personal connections to rare diseases.
Dr Kaustuv Bhattacharya
Metabolic Paediatrician, Genetic Metabolic Disorders Service (NSW); Conjoint Senior Lecturer, University of Sydney (NSW)
Dr Bhattacharya performed undergraduate medical training at the University of London. His post graduate MD (res) at the University of London involved investigator-led clinical trials conducted at The National Hospital for Neurology and Neurosurgery and Great Ormond Street Hospital for Children in London. He has published novel approaches to treatment of glycogen storage disease type I, HMG Co-A Lyase deficiency, fat oxidation disorders, Hunter syndrome and Aspartylglucosaminuria. He has been in Australia since 2008 working as a full-time metabolic specialist. He is currently president of the Australasian Society of Inborn Errors of Metabolism (ASIEM).
Dr Lisa Ewans
Clinical Geneticist (NSW); Conjoint Senior Lecturer, University of New South Wales Sydney; Research Officer, Garvan Institute of Medical Research
Dr Lisa Ewans is a Clinical Geneticist at Sydney Children’s Hospitals Network (SCHN) Randwick and a post-doctoral Research Officer at the Genomics and Inherited Disease Program at the Garvan Institute of Medical Research. Dr Ewans specialises in diagnosing and supporting individuals with, or at risk of, genetic conditions throughout the lifespan. Her research focuses on improving diagnosis for rare disease through genomics and novel methods and translating these to the clinic to improve patient outcomes. She co-manages a rare disease registry at SCHN and is helping to establish an SCHN undiagnosed disease program as well as understanding and improving the value of genetic services to the rare disease community.
Prof Lynn Gillam AM
Clinical Ethicist; Academic Director of the Children’s Bioethics Centre at the Royal Children’s Hospital Melbourne (VIC)
Lynn is a Clinical Ethicist and Academic Director of the Children’s Bioethics Centre at the Royal Children’s Hospital Melbourne. Lynn provides clinical ethics case consultation, policy advice and leads research in paediatric clinical ethics. She is also Professor in Health Ethics at the University of Melbourne, in the Department of Paediatrics, where she teaches ethics and qualitative research design in the MD and other health professional courses.
A/Prof Paul Lacaze
U Monash U/Alfred, Genomics, Cohort Studies, Biobanking, Rare Disease Registries (VIC)
Dr Paul Lacaze is a geneticist and Head of Public Health Genomics at Monash University. He conducts research into the role of genetic data in public and population health, through large-scale cohort studies, biobanks, clinical trials, and registries. He leads genomics for the ASPREE study, Australia’s largest clinical trial and study of healthy ageing in >15,000 Australians and works with the Monash Registries Science Unit in the area of rare disease registries. He conducts research into the ethical, legal and social issues associated with the use of genomic information in society. He founded the Australian Non-Genetic Discrimination Working Group, a national body advocating for regulatory change around the use of genetic test results in life insurance. He is passionate about developing a National Plan and Alliance for Rare Disease Registries in Australia.
Dr Kristen Nowak
Director, Office of Population Health and Genomics, WA Department of Health (WA)
Dr Kristen Nowak has over 20 years’ experience as a medical researcher in the rare diseases field, focusing on finding new disease genes and evaluating potential therapies. Her office has a strong focus on the translation of evidence-based genomic and screening technology into the health system, and a longstanding emphasis on improving the healthcare journey of people with rare diseases. Kristen is a member for the Standing Committee on Screening, and the Project Reference Group on Health Genomics. She is also chair of the national Newborn Bloodspot Screening Program Management Committee. Kristen is an Honorary Research Fellow at the Harry Perkins Institute of Medical Research and an Adjunct Senior Lecturer at the University of Western Australia.
Dr (Elizabeth) Emma Palmer
Clinical Geneticist, Sydney Children’s Hospitals Network; University Lecturer, University of New South Wales (NSW)
Dr (Elizabeth) Emma Palmer is a university lecturer at the University of New South Wales in Sydney, Australia, and Clinical Geneticist at Sydney Children's Hospitals Network. Dr Palmer is passionate about improving the patient journey for all with rare genetic conditions and their families. Her work aims to improve the recognition of the possibility of genetic conditions by improving clinician education about rare diseases, maximising the diagnostic yield of genetic tests and optimising patient care by linking families to best practice guidelines, treatments and supports. Dr Palmer strives to ensure that the patient and family voice is always central to all her research. She has over 100 peer reviewed journal articles, including those describing nine new genetic conditions.
Prof John Rasko
Director, Department of Cell and Molecular Therapies, Royal Prince Alfred Hospital and the Gene and Stem Cell Therapy Program, Centenary Institute, University of Sydney (NSW)
Professor John Rasko is an Australian pioneer in the application of adult stem cells and genetic therapy, and President (2018-20) of the International Society for Cell & Gene Therapy. He is a clinical haematologist, pathologist and scientist with an international reputation in gene and stem cell therapy, experimental haematology and molecular biology. In over 170 publications he has contributed to the understanding of stem cells and blood cell development, gene therapy technologies, cancer causation and treatment, human genetic diseases and molecular biology. John has served on a number of hospital, state and national bodies. He is the recipient of national and international awards in recognition of his commitment to excellence in medical research, including appointment as an Officer of the Order of Australia.
Ann Single
Coordinator, Patient Voice Initiative, Health Technology Assessment international Vice-President, Patient and Citizen Involvement Interest Group Outgoing Chair (QLD)
Ann Single is the Coordinator for the Patient Voice Initiative. She’s worked in patient involvement in health technology assessment (HTA) for more than 20 years, first directing it and in communication within Scotland’s HTA agency and then sharing and developing good practice in Health Technology Assessment international’s (HTAi) Patient and Citizen Involvement Interest Group (PCIG). Chair of this group from 2019-2023, Ann now is PCIG Outgoing Chair and HTAi Vice-President, the first from the patient community sector. Ann co-edited the only book on patient involvement in HTA (version two due June 2025), is a faculty member of the International Patient Advocacy Management Masters Course at Rome’s Catholic University (Università Cattolica del Sacro Cuore) and has most recently published on patient involvement in HTA governance and process development. She served as a consumer representative on the Australian Government’s HTA Policy and Methods Review Reference Committee (due May 2024).
Dr Jane Tiller
Ethical, Legal & Social Adviser in Public Health Genomics, Monash University, Co-founder, Australian Genetic Non-Discrimination Working Group, Co-lead, DNA Screen (VIC)
Dr Jane Tiller is a lawyer, genetic counsellor and public health researcher who is passionate about increasing equitable access to genomic medicine for public health outcomes. She is Ethical, Legal & Social Adviser in Public Health Genomics at Monash University and co-founded the Australian Genetic Non-Discrimination Working Group. Jane led a project from 2020-2023 about genetic discrimination in life insurance and continues to work towards policy outcomes in this area. She is co-lead of DNA Screen, a world-first study piloting the offer of preventive DNA screening to the Australian adult population.
RVA Staff
RVA’s staffing team is dedicated to working towards the best outcomes for Australians living with a rare disease.
Nicole Millis
Chief Executive Officer (VIC)
Nicole was appointed Chief Executive Officer of RVA in June 2016. A qualified social worker, Nicole has both personal and professional experience in the rare disease sector. Nicole has engaged in rare disease advocacy since 2008 and has extensive experience regarding access to treatments. Since 2018, Nicole has held the role of consumer nominee on the Life Saving Drugs Program Expert Panel. In 2024, Nicole was appointed to the Health Technology Assessment (HTA) Review Implementation Advisory Group. Under Nicole’s guidance, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.
Louise Healy
Education and Advocacy Manager (QLD)
Louise has extensive experience working as a consultant and coach in the corporate sector and has post graduate qualifications in psychology. Her connection with rare conditions began when her first child was born with a rare metabolic disorder. Louise has been involved in rare disease support and advocacy for over 10 years and she is the current Vice President of the Metabolic Dietary Disorders Association (MDDA). She has led successful advocacy campaigns for access to medicines and support programs for people with rare disorders of protein metabolism. Louise is a previous RVA Board member, current member of the Queensland Genomics Community Advisory Board and a founding board member of the Global Association for PKU.
Fiona Lawton
Disability Advocacy Manager (QLD)
Fiona has over 25 years of experience working as a senior manager in the government sector across community and stakeholder engagement, safety and risk management, and training. She has a science degree specialising in neurology and post graduate qualifications in psychology. Fiona has a son who lives with Angelman syndrome, a rare monogenic neurodevelopmental disorder and has actively engaged in rare disease support and advocacy for over 15 years. She is the current President of the Angelman Syndrome Association Australia (ASAA) and was a founding board member of Foundation for Angelman Syndrome Therapeutics (Australia) in 2010. Fiona is a passionate disability advocate and health consumer representative for people with rare disease and complex disability. She currently sits on the Standing Committee for the National Patient Organisation Network (Australia) and Intellectual Disability Peak Working Group, led by Down Syndrome Queensland.
Sarah Cannata
Communications Manager (VIC)
Sarah is a qualified journalist and has over 10 years’ worth of experience working in communications. In addition to publishing a picture book, Sarah has been published in 'The Huffington Post', 'Elephant Journal', 'Mamamia', 'The Age', 'Women's Agenda', 'SBS Online' and more. Sarah has extensive experience across a range of sectors, particularly in the not-for-profit space. She is dedicated to using her skills to benefit Australians living with a rare disease.
Dr Falak Helwani
Research and Evaluation Manager (QLD)
Falak is a former research scientist with a PhD in molecular cell biology from the University of Queensland and postdoctoral experience in hematopoietic stem cell and bone marrow transplant biology at the Mater Medical Research Institute. She has co-authored several publications and has presented her research both in Australia and overseas. Falak paused her research career to care for her daughter who has a rare congenital heart defect and later learned that her youngest son has a rare auto-inflammatory disease. As RVA’s Research and Evaluation Manager, Falak is committed to ensuring that evidenced-based understanding of rare disease drives advocacy and policy reform.
Anne Hunter
Executive Assistant to the Chief Executive Officer, Operations Manager (VIC)
Anne works for RVA as our Administrative Officer and is based in Victoria. Anne has a personal connection with rare disease and lives with Fabry Disease. She also cares for a child living with Fabry Disease. Anne is on the Fabry Australia committee.
Malcolm Fung
Finance and Compliance Manager (VIC)
Malcolm has worked in the not-for-profit sector in Australia and internationally since 2001. This has included roles with organisations working with people with disabilities and other vulnerable communities in developing countries. His background is in internal auditing, risk management and operations. Malcolm has a personal connection with a rare disease and this has motivated him to use his skills and experience to contribute to RVA’s work.
Dr Amanda Choo
Resources and Information Officer (SA)
Amanda comes from a background in scientific research, having graduated with a PhD in Sciences (in the area of Genetics) from the University of Adelaide. She has previously worked on research projects studying Mucopolysaccharidosis Type III (MPS III, Sanfilippo Syndrome) and the tumour suppressor gene WW domain containing oxidoreductase (WWOX). Amanda has also worked as a University tutor for Medical Genetics. Since then, she has gone on to lead projects on developing genetic technologies for the horticultural sector, all whilst maintaining an active interest in human genetics. Amanda has a personal connection with rare disease, living with myasthenia gravis, and is passionate about using her scientific skills and knowledge to develop and provide customised, evidence-based information about rare diseases for the rare disease community.
Jess Brooklyn
Education Project Officer (WA)
Jess brings a wealth of experience from the youth work and tertiary education sectors. A qualified sociologist, Jess has always sought to help others through grass-roots movements, advocacy and building capacity through education. After more than 20 years seeking medical help for their condition, Jess was diagnosed with Ehlers-Danlos Syndrome in 2020. Jess is very passionate about promoting awareness and understanding so that others can avoid diagnostic delays and obtain the support required when living with a rare disease.
Evelyn Loh
Communications and Information Officer (VIC)
Evelyn comes from a background in clinical trials and healthcare marketing. She holds a Bachelor of Biomedicine and has experience in cancer research. In her previous roles, Evelyn led patient recruitment and communication efforts, coordinating multiple dermatology phase 1-4 clinical trials. Her close interaction with people has provided a deep understanding of the challenges they face in accessing clinical care and treatment. Evelyn is passionate about raising awareness and providing resources through effective science communication and content creation. She is excited to contribute her diverse skillsets and enthusiasm for marketing to drive improved outcomes for the rare disease community.
Amanda Dickey
Disability Project Officer (NSW)
Amanda adopts a social justice lens and has experience working in senior analyst positions within the for-purpose and corporate sectors. She holds a social science degree in Human Services and is advancing her knowledge in the social impact and strategic learning disciplines. Amanda has a personal connection to Huntington’s disease and its community, and has been involved in grassroots advocacy, board governance, operational and program management. She’s inspired by the rare disease community’s strength, and this motivates her to use her skills and experience to improve quality of life and wellbeing outcomes for Australians living with a rare disease.
