CanForum25

Now it’s personal: equity and access for all

Event Details

Tuesday 2 September 2025, 10:00am – 4:30pm,
The Great Hall, Australian Parliament House, Canberra

The rare community has waited too long for a fair go; for equal access to diagnostic tests, information, support, trials and treatments. Our Cancer Lived Experience Survey has given us – for the first time – a national view of what’s going on for people with rare cancers, and for their carers, from the first signs and symptoms through to palliative and end of life care.

With almost 2,500 responses from people living with cancer and from carers, we now have groundbreaking insights of the lived experience of adults with cancer in Australia, with a particular focus on people with rare and less common cancers.

This deep dive into the lives of so many people impacted by cancer has provided us with an all-important baseline, helping us to better understand their experiences and unmet needs. These insights will inform what more needs to be done to bring about real change, so that everyone is given the best possible chance to live beyond cancer.

When we know better, we do better. Patients have waited too long. Now it’s personal.

 

Collage of patients

 

CanForum is the annual, patient-focused advocacy event for Rare Cancers Australia, that brings together patients, carers, government, patient organisations, health professionals and industry to investigate the key issues in cancer care.

Hear from expert speakers and panels, join the conversation, be inspired by personal stories from people living with cancer and walk away with a refreshed determination to help change the story of a rare cancer diagnosis.

This year’s Canforum will not be livestreamed, however a complete recording of all sessions will be made publicly available within 24hours of the events completion.

 

Session information

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.

Full program to be announced soon!

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.

Full program to be announced soon!

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 experts 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.

Full program to be announced soon!

Speakers

More speakers to be announced soon

Prof Matt Brown Headshot

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.

Mei Krishnasamy

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

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.

Headshot of carer Kevin Macisaac

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.

Selina Walker

Selina Walker
2024 ACT Australian of the Year Local Hero
Ngunnawal woman and emerging elder.

Selina Walker is the the proud granddaughter of Senior Ngunnawal Elder Aunty Agnes Shea OAM, who sadly passed in March 2023. She has taken over hergrandmother’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 Headshot

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.

Book your ticket

As CanForum25 has a strong focus on the lived experience of people with cancer and their carers, we look forward to welcoming as many patients and carers as possible to attend in person.

Please note, this year’s Canforum will not be livestreamed, however a complete recording of all sessions will be made publicly available within 24hours of the events completion.

Ticket Type
Patients and Carers Complimentary
Patient Organisations Complimentary
Other (including Media or MP) Complimentary
Medical (Health Care Professionals & Treatment Centres) $550
Corporate $990

Register

Life-Science Industry registration

For all Life-Science Industry partners wanting to attend this year’s CanForum, please submit your information below or contact us at [email protected] if you have any questions:

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Event Sponsors

Rare Cancers Australia would like to acknowledge our supporters who help make CanForum possible:

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