CanForum25

Last year, we recommended the need for a national strategy and strong national leadership to make genomic testing and personalised medicine available to everyone with a rare cancer.

Today, we are at a tipping point in cancer care. Australia has the opportunity to transform cancer outcomes, shifting from generalised, ‘one size fits all’ treatments to highly personalised, effective therapies that improve outcomes and minimise harm, especially for people with rare cancers. Comprehensive genomic profiling (CGP) is already being used in Australia and internationally, with rapidly growing evidence for its use and effectiveness. But how do we quickly move this technology out of research and into standard of care?

Australia is making steps – but is it enough? Will the newly established Genomics Australia have the investment and influence it needs to make genomic-led care a reality? Hear expert industry, government and patient advocate speakers address these critical questions and more.

All this talk of personalisation, but is it getting through? Or are our systems and structures holding us back?

For the first time, we have a national view of the experience of people with rare cancers and their carers. Are they getting the care and support they need – or have services been paying lip service to person-centred care?

Hear from keynotes and a panel of expert speakers on how research and innovation is pacing the way for better care for people with rare cancers in Australia, and how with a swell of innovative new therapies emerging, what holds the greatest potential for people with rare cancers.

With information comes power, but only if we use it. We now know what people with rare cancers need – it is up to every one of us to listen, act, and do better.

Patients are people. When we lose sight of that, we lose the chance to deliver the best outcomes.

Hear from leading academia on how supportive care can make all the difference to treatment and care outcomes and how the fundamental value of experience and listening to patients can transform services.

We know the issues. We know the inequities. We know the solutions. Now, it is time for action. Now, it’s personal.

Tiffany Boughtwood (BSc (hons) MBA)

Australian Health Genomics Commissioner

Tiffany Boughtwood is the inaugural Australian Health Genomics Commissioner, guiding the work of Genomics Australia and providing advice to Government based on broad engagement with the genomics sector and community.

Tiffany has over 25 years’ experience in molecular biology and management: leading academic and diagnostic genomic programs; collaborating internationally in genetic and genomic research; and consulting in health genomic implementation.

She was the Managing Director of Australian Genomics, a national collaborative supporting genomic research and its translation into clinical practice. She served on the World Economic Forum Global Future Council for Biotechnology and the WHO Collective Global Network for Rare Disease.

Tiffany is a member of the WHO Technical Advisory Group on Genomics, is on the Strategic Leadership Committee for the Global Alliance for Genomics and Health and is an International Advisor to the MyGenom Project Malaysia.

Professor Matt Brown
Chief Scientific Officer of Genomics England

Prof. Matt Brown is a clinician-scientist who trained initially in medicine and rheumatology in Sydney, Australia before completing a Doctorate of Medicine based at University of Oxford, focusing on genetics of ankylosing spondylitis.

In 2013, he was elected to Fellowship of the Australian Academy of Sciences in recognition for his achievements in genetics research.  Shortly after, he was appointed to the position of Chief Scientific Officer of Genomics England.

His work focuses on the genetics of human diseases, with a particular focus on common and rare bone and joint diseases, and in cancer genomics and personalised medicine. He also continues to practice rheumatology, with a particular focus on spondyloarthritis.

Tori Brown
President of North Asia-Pacific and General Manager of Australia and New Zealand, Lilly

Throughout her 20 years at Lilly, Tori has experience working in many markets across the world including US, Switzerland and Puerto Rico.

Tori has launched multiple brands, including incretins, in markets across the world. She has extensive experience working in Cardiometabolic Health. Prior to joining Lilly, Tori held roles in engineering and operations.

Tori graduated from Purdue University with a degree in Civil Engineering and received her MBA from University of Minnesota. Tori exudes passion for cultivating high performing, diverse teams focused on making lives better for patients around the world.

Hon. Mark Butler MP
Minister for Health and Ageing, Minister for Disability and NDIS

Mark Butler has been a Labor Member in the Federal Parliament since 2007 and is the federal Minister for Health and Ageing, Minister for Disability and the National Disability Insurance Scheme. He served as the Member for Port Adelaide from 2007 – 2019 and after a federal redistribution, which saw the abolition of the seat of Port Adelaide, he was elected as the Member for Hindmarsh in 2019, 2022 and again in 2025.

Mark served as Minister for Ageing and Australia’s first Minister for Mental Health in the Gillard Government. He has also held the ministries of Housing, Homelessness, Social Inclusion, Climate Change, Water and the Environment.

Before Mark was elected to parliament, he worked for some of the most disadvantaged people in the community as an official with United Voice for over 15 years, including 11 years as State Secretary.

In 2003 he was awarded the Centenary Medal for services to trade unionism.

In 2013 Mark was awarded the Alzheimer’s Disease International Award for Outstanding Global Contribution to the Fight Against Dementia.

Mark served as President of the South Australian Branch of the ALP from 1997- 1998 and as a member of the ALP National Executive from 2000 to 2014. He served as Labor’s National President from 2015-2018 and as Senior Vice President from 2018-2023.

Mark is the author of Advanced Australia – The Politics of Ageing, published in 2015; and Climate Wars, published in 2017.

Following the election of the Albanese Labor government in May 2022, Mark was appointed as Minister for Health and Aged Care.

Following the 2025 federal election, Mark was appointed Minister for Health and Ageing, and Minister for Disability and the National Disability Insurance Scheme.

Mark holds a First Class Honours Law degree, an Arts degree and a Master’s degree in International Relations. He lives in Grange, and has three children. He is a keen supporter of Port Adelaide Football Club.

Associate Professor Seth Cheetham
Group leader and Australian Research Council fellow at the Australian Institute for Bioengineering and Nanotechnology, University of Queensland
Deputy Director of the BASE mRNA facility

As Deputy Director of Australia’s leading academic mRNA manufacture and research site, A/Prof Seth Cheetham leads a research program of 17 researchers that aims to progress new classes of targeted mRNA therapeutics to the clinic.

He has authored more than 30 publications, in some of the most influential molecular biology journals and has attracted more than $17M in funding. He was recently awarded a $3.3M grant to establish Australia’s first centre for personalised mRNA cancer vaccines.

He is a recipient of the Genetics Society of Australasia’s Alan Wilton Prize for most outstanding early career genetics researcher.

Christine Cockburn
Chief Executive Officer, Rare Cancers Australia

Christine Cockburn is a bold and compassionate leader in Australia’s cancer care sector, known for her strategic vision, advocacy acumen, and unwavering commitment to improving the lives of people affected by rare and less common cancers.

As RCA’s CEO, she is at the forefront of national efforts to transform the cancer care landscape, leading with empathy and strategy—ensuring no one faces cancer alone and that every individual has the chance to live well beyond their diagnosis.

Christine brings a unique blend of expertise in sociology, public health, and systems thinking to her leadership, backed by degrees from the University of New England and Monash University. Since joining RCA in 2018, she has shaped the organisation’s growth through senior roles in patient support and operations, championing person-centred care, equity, and innovation at every step. She has been the driving force behind several national initiatives, including a groundbreaking telehealth navigation service and the Rare Cancer Support Guide.

Now as CEO, she is steering RCA through a critical era of expansion in services, partnerships, and policy reform. Christine’s influence extends nationally and globally, serving on numerous advisory groups focused on genomics, health equity, and system reform. She is also supervising a PhD exploring patient-centred information for those with rare cancers.

Grounded in evidence and driven by the need for change, Christine is reshaping how rare cancer care is delivered—and how it’s understood.

Associate Professor Rachel Conyers
Clinical Lead of Bone Marrow Transplantation at The Royal Children’s Hospital, Melbourne, and Group Leader of Cancer Therapies at the Murdoch Children’s Research Institute (MCRI)

Paediatric oncologist and clinician scientist, The Royal Children’s Hospital, Melbourne

Assoc/Prof. Rachel Conyers has specialist training in childhood leukaemia, lymphoma, and bone marrow transplantation.

She is anthe current Clinical Lead of Bone Marrow Transplantation at The Royal Children’s Hospital, Melbourne, and Group Leader of Cancer Therapies at the Murdoch Children’s Research Institute (MCRI). A/Prof Conyers is internationally recognised leader in pharmacogenomics and rare toxicities, exemplified by her role as PI for the cardio toxicity working group within the Ponte De Legno Childhood Leukameia Group and representation on the Children’s Oncology Group Pharmacogenomics and Epidemiology working group (United States).

A/Prof Conyers is also an Associate Investigator with the Novo Nordisk Foundation Centre for Stem Cell Medicine, reNEW.

In Australia she was the lead for the MRFF funded VPCC 1.0 Pharmacogenomics Implementation and Discovery and remains Co-chair of the Pharmacogenomics Working Group in the Zero Childhood Cancer Program.

Azure Hermes
Deputy Director, National Centre for Indigenous Genomics (NCIG), Australian National University.

A proud Gimuy Walubara Yidinji woman, Azure brings deep cultural knowledge and a strong advocacy background to her leadership role, ensuring Indigenous voices remain central to genomic research in Australia.

In her role, Azure leads national partnerships and community engagement efforts with Aboriginal and Torres Strait Islander communities. She works to ensure that research involving Indigenous genomic data is guided by principles of cultural safety, transparency, and Indigenous data sovereignty. Her focus is on building trust, supporting community decision-making, and ensuring tangible benefits flow back to the communities involved.

Azure is passionate about making complex scientific information accessible and relevant to community priorities. She is known for her ability to move between academic, policy, and community settings with integrity and clarity.

Her leadership at NCIG reflects a broader commitment to ethical research that respects the rights and aspirations of First Nations peoples. Through her work, Azure is helping shape a more inclusive and equitable future for genomics in Australia. 

Tenielle Jordan
Patient Advocate

Tenielle was diagnosed with colorectal cancer shortly after her 33rd birthday and has spent the last three years navigating the NSW health system as a patient living with advanced cancer. While Tenielle is grateful for the exceptional care she has received as a patient at Chris O’Brien Lifehouse, her treatment journey has highlighted the impact that a lack of research, resources and transparency in the sector can have on the patient experience. This has motivated Tenielle to become a patient advocate, driven by the knowledge that we can and should do better for future patients.

While Tenielle will be in active treatment for the foreseeable future, she continues to work full time as the General Counsel of an Australian impact investment fund manager. The support she has received from her employer has enabled Tenielle to continue doing the work she loves while receiving life-saving care. This has inspired another passion in Tenielle’s patient advocacy, which is encouraging employers to provide support and flexibility, so patients who wish to do so can retain a critical sense of routine and normalcy while living with cancer.

Dr Deme Karikios
Medical Oncologist at Nepean Hospital

Dr Deme Karikios is a medical oncologist and head of department at Nepean Hospital in Sydney. He has a clinical and research interest in thoracic and gastrointestinal malignancies.

Deme also has a research interest in costs and value of anticancer drugs, decisions about treatment with expensive unsubsidised anticancer drugs and financial toxicity. He was awarded his PhD in 2019, entitled “The consequences of rising anticancer drug costs in Australia” which he undertook at the NHMRC Clinical Trials Centre, University of Sydney.

Deme is a founding member of the Common Sense Oncology movement and active member of the COSA Financial Toxicity Working Group.

Deme has co-supervised several PhD students and is a senior clinical lecturer at the University of Sydney

Deme has an interest in cancer care policy and is a past chair of the Medical Oncology Group of Australia.

Professor Mei Krishnasamy PhD, FAAN
Professor of Cancer Nursing at the University of Melbourne

Professor Mei Krishnasamy is Professor of Cancer Nursing at the University of Melbourne, Research and Education Lead for Nursing at the VCCC Alliance, and Honorary Research Fellow at the Peter MacCallum Cancer Centre.

She leads a program of nurse-led research that has been translated into health policy, focusing on cancer supportive care, equity of access to care, and the experiences and outcomes of care for older adults with cancer.

She is past President of the Clinical Oncology Society of Australia and the Cancer Nurses Society of Australia and is a Fellow of the American Academy of Nurses.

Associate Professor Judith Lacey MBBS, FRACGP, FAChPM (RACP)
Head of Supportive Care and Integrative Oncology at Chris O’Brien Lifehouse

A/Prof Judith Lacey is the Head of Supportive Care and Integrative Oncology at Chris O’Brien Lifehouse. With 25 years’ experience in palliative and supportive cancer care, she is a national and international leader in supportive cancer care and integrative oncology, committed to improving outcomes and quality of life for people living with and beyond cancer.

Judith holds adjunct academic positions at the University of Sydney and Western Sydney University’s NICM Health Research Institute. She is Australia’s ambassador to the Society for Integrative Oncology (SIO), and a member of its Board of Trustees. She is also honoured to be an advisor on the development of the first Optional Care Pathway for people with rare and less common cancers, led by Rare Cancers Australia.

Her research focuses on supportive care, integrative oncology, implementation science, patient-reported outcomes (PROMs), prehabilitation, survivorship, and supportive care service development.

Kevin MacIsaac
Carer

Kevin brings a deeply personal perspective to healthcare. He supports his wife Caitlin, who is living with advanced ovarian cancer, and has spent years navigating the complexity of our health system—balancing advocacy, caregiving, work, and family life. His insights as a partner and carer highlight the unseen emotional labour, logistical strain, and quiet resilience required behind the scenes.

In his professional life, Kevin is a communication coach and facilitator who works with leaders across sectors—from healthcare to design to finance—helping them show up with clarity, presence and purpose. As a professional working actor and sometime stand-up comedian, Kevin draws on decades of performance experience to teach storytelling, influence, and emotional intelligence in high-stakes environments.

At CanForum, Kevin will share his reflections and reveal key findings from the latest lived experience survey, helping bring the voice of carers to the fore.

Professor Tracey O’Brien AM
NSW Chief Cancer Officer and CEO of the Cancer Institute NSW

With over 25 years of experience, Prof Tracey O’Brien is a highly respected health executive, oncologist, and clinician-researcher renowned for her leadership in advancing innovation and fostering collaboration across cancer care.

She previously directed the Kids Cancer Centre and the Transplant & Cellular Therapy Program at Sydney Children’s Hospital. She has held prominent leadership roles, including Advisory Chair of Cancer Australia and Vice Advisory-Chair for the International Centre for Bone Marrow Transplant Research (Africa, Asia, and Australasia) and V/President of ANZ Children’s Oncology Group.

Tracey holds an MBA, a Master of Law (Health), and academic appointments at UNSW, Macquarie University, and Western Sydney University, and remains active in clinical practice and mentoring the next generation of clinician-researchers.

Kirsten Pilatti
Chief Executive Officer, Breast Cancer Network Australia

Kirsten Pilatti is a transformational leader who has worked in cancer for over two decades.

Under her leadership, BCNA has achieved breakthrough victories in healthcare policy and practice.

Recognised for her expertise in healthcare transformation, Kirsten was appointed in 2024 to the Health Ministers – Health Technology Assessment Review Implementation Advisory Group, where she is helping to architect generational reforms to Australia’s healthcare system. Her media presence and industry leadership have made her a sought-after voice on healthcare equity, patient rights, and the future of cancer care in Australia.

Kirsten brings unique insights into building effective advocacy movements, navigating complex healthcare systems, and creating lasting policy change while putting patients at the centre of every decision.

Kirsten’s vision is clear: ensuring every Australian, regardless of location or circumstance, has access to the very best cancer care, treatment, and support available.

Senator the Hon Anne Ruston
Shadow Minister for Health and Aged Care, Shadow Minister for Disability and the NDIS, Shadow Minister for Sport and the Deputy Leader of the Opposition in the Senate

Senator the Hon Anne Ruston has been a Senator since September 2012. Senator Ruston was appointed Assistant Minister of Agriculture and Water Resources in September 2015. She was subsequently appointed as Assistant Minister for International Development and the Pacific in August 2018. Prior to the 2022 election, Senator Ruston was a Cabinet Minister, holding the positions of Minister for Families and Social Services, Minister for Women’s Safety and Manager of Government Business in the Senate for three years.

Prior to becoming a Senator, Anne held several senior positions in government and the private sector, including as the inaugural chief executive of the National Wine Centre. She was also a primary producer and irrigator, owning and operating the largest commercial rose garden in Australia.

Born and raised in Renmark, on the River Murray in South Australia, Anne continues to have a strong connection with the Riverland community. She is passionate about regional South Australia and is the only SA Senator who maintains a regional electorate office.

Adjunct Professor Sophie Scott OAM
International Speaker
TEDx Speaker Author
Adjunct Professor University of Sydney
LinkedIn Top Voice
Positive Psychology Practitioner

Canforum MC

Sophie Scott is an international speaker, award-winning broadcast journalist, educator and Author.

Sophie understands public health and how to communicate it effectively. She has been a leading voice on Australian TV, radio and online in health and science for more than two decades.

Her professional expertise is health journalism, patient safety investigations and advocacy for health prevention.

She’s won numerous awards for her ground-breaking health journalism and has a strong reputation for integrity and balance. Sophie was awarded the Order of Australia Medal for services to Australian broadcasting and community health. She was also awarded an Australian Museum Eureka Award for excellence in medical reporting in 2004.

She is a skillful communicator, with a strong history as a keynote speaker at leading medical conferences, a TEDx speaker and is now in demand as a presentation and storytelling coach for experts.

She teaches the neuroscience of habits to prevent burnout and reclaim your energy.

Sophie has degrees in history, a Certificate in Applied Positive Psychology and has written three science-based health books.

Professor David Thomas
Director of the Centre for Molecular Oncology, University of New South Wales & Chief Strategy and Science Officer at Omico

As a clinician-scientist, Prof David Thomas’ focus is on the application of genomic technologies to the understanding and management of cancer, particularly sarcoma.

He established the not-for-profit company, Australian Genomic Cancer Medicine Centre, trading as Omico, to lead a national precision medicine program for patients with rare and early onset cancers.

He has over 200 research publications, including lead or senior author papers in Science, Cancer Cell, Journal of Clinical Investigation and Lancet Oncology.

Selina Walker
2024 ACT Australian of the Year Local Hero
Ngunnawal woman and emerging elder, CanForum Welcome to Country.

Selina Walker is the proud granddaughter of Senior Ngunnawal Elder Aunty Agnes Shea OAM, who sadly passed in March 2023. She has taken over her grandmother’s cultural obligations and continues her work in the ACT and surrounding regions striving for equity and better outcomes for Aboriginal and Torres Strait Islander people in the spirit of Reconciliation.

For the past 20 years, Selina has been working in the ACT Aboriginal and Torres Strait Islander community and surrounding regions as a community representative on many different boards and committees.

As a kinship carer, she is a strong advocate for young people, with a passion and drive for mental health, suicide prevention and awareness following the deaths of six family members. She is also an established aboriginal artist and has started studying Psychology at University of Canberra.

In 2024 she was awarded ACT Australian of the Year Local Hero for her work and for being one of the founding members of Yerrabi Yurwang Child and Family Aboriginal Corporation.

Adjunct Associate Professor Jo Watson
Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC)

A/Prof Jo Watson is the Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC) and also Chair of the HTA Consumer Consultative Committee.

She is the Deputy Chair of the MBS Review Advisory Committee (MRAC), and an Honorary Life Member of the Consumers Health Forum.

She has been a community representative and patient advocate in the Australian HIV response since the early nineties, including as the Executive Director of the National Association of People living with HIV Australia (NAPWHA) from 1998 to 2014.

She has contributed to health policy reform and analysis in the areas of Public Health, the National Medicines Policy, and PBS programs over the past several decades, including contributions to peer reviewed publications and national and international research projects.

Natalie Willacy
Patient Advocate

Natalie is 35 years old and lives with her mum on their beautiful family farm in Byron Bay.

When Natalie was diagnosed with an extremely rare and aggressive form of cancer, called adrenocortical carcinoma, in February last year, she felt completely blindsided.

She also experienced dismissal of her symptoms and delays with appointments from doctors, learning to rely on her instinct and self-advocate in order to get answers.

After diagnosis, Natalie underwent chemotherapy with awful side effects and eventually was told she was eligible for an immunotherapy called Keytruda. She has had to travel to Brisbane to access the drug and pay $8,000 every six weeks out of her own pocket.

As a result, she has had to access and spend all of her superannuation, move out of her house and her mother had to sell 200 head of cattle from their farm. But her treatment is working and she’s still here, so she counts herself as “lucky”.

But Natalie sees the injustice of her rare experience and doesn’t want others to have to go through the same thing. She has advocated strongly for equitable access to drugs on the PBS, attending RCA’s parliamentary dinner with MPs to share her story, becoming the face of RCA’s Federal Election campaign and appearing often in media shining a light on the challenges rare cancer patients face every day – just as she is still facing her own.