Rare cancers, not so rare

Published Catarina de Freitas on

Monday Lunch Live 

23 March 2026 (Video recording below) 

The Stafford Fox Rare Cancer Program: Bringing hope and better treatment outcomes for people with rare cancers

The WEHI-Stafford Fox Rare Cancer Program (WEHI-SFRCP) is a national program, which consents individuals with rare cancers and enables access to archival blocks, fresh tumour tissue, blood and clinical data. Since the Program’s conception, WEHI has consented more than 950 patients with more than 100 different types of rare cancer.

They have successfully generated 122 patient-derived xenograft (PDX) models, 18 cell lines and 41 organoid models of rare gynaecological cancers. They use these preclinical models to test novel combinations of therapies based on their molecular profiles to find improved treatment options for individuals with these aggressive cancers.

For ovarian carcinosarcoma (OCS), their research led to the development of the EPOCH trial, aimed at targeting the process of epithelial-to-mesenchymal transition, a key driver of these tumours. Organoid models of OCS have now been used to test double and triple combination therapies targeting the MAPK pathway, which they identified as being a major dependency in these tumours.

For uterine leiomyosarcoma (uLMS), their research led to PARP inhibitors and platinum therapy, two treatments not previously indicated for uLMS, demonstrating impressive efficacy in patients.

Finally, for uterine serous carcinoma, they are undertaking a number of drug screens, which based on molecular profiles are being performed in the presence of HER2- or PARP-targeting agents, to determine the most effective combination therapies.

Through molecular profiling of rare cancers and testing rational genomically-matched drug combinations in novel preclinical models, they are improving treatment options and quality of life for individuals with these rare cancers.
 

Chair

Christine Cockburn
CEO, Rare Cancer 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 Chief Executive Officer of Rare Cancers Australia (RCA), 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.

Speakers 

Dr Holly Barker
Senior Research Scientist, WEHI

Dr Holly Barker co-leads the WEHI-Stafford Fox Rare Cancer Program and projects spanning genomics, organoid and PDX model development, drug screening and clinical translation—including being Translational Research Lead on the EPOCH trial.

These research projects cover topics, such as epithelial-to-mesenchymal transition, DNA damage repair, genomic instability, cell signalling, matrix biology and metastasis, and employ a range of techniques, including spatial transcriptomics, single-cell RNA sequencing, multiplex immunofluorescent imaging, cell surface proteomics, flow cytometry, drug screening, organoid development and 3D bioprinting.

She currently holds a Victorian Cancer Agency Mid-Career Fellowship to undertake multi-omic analysis of uterine serous carcinoma and perform drug screening to define combination therapies involving HER2- and PARP-targeting agents.

A/Prof Narelle Patton
Consumer

A/Prof Narelle Patton works at the Charles Sturt University in the Faculty of Science and Health and has experienced breast, ovarian and uterine cancers. She has gone through surgery, chemotherapy, radiation and hormone therapy. Currently tumour free, she is grateful for the wonderful treatment and care she received at Chris O’Brien LifeHouse and the Royal Womens’ Hospital.

She became involved in the Consumer Program at WEHI and contributes to Dr Barker’s research through providing input on lay presentations, reports and grant applications, as well as a patient perspective on potential combination therapies for ovarian and uterine cancers.

Resource details

UBU
Course type
Webinars
Duration
60 mins
Price
$0.00
Curriculum Area
Treatment (incl. Supportive Care)
Research (incl. Clinical Trials)
Clinical Care
Speciality
Clinical trials
Clinician
Consumer / patient / carer
Early to mid career researcher
Senior researcher / scientist
Cancer sciences
Clinical trials
Monday Lunch Live
Rare cancers
Research

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