Research Quests
Patient-Powered Research
Rare cancers are around 1 in 5 Australian diagnoses, yet attract only a small fraction of dedicated research funding. Patients and their communities are changing that themselves.
The cancers that fall through the funding gap
A cancer is called rare when fewer than 6 people in 100,000 are diagnosed each year. Together, rare and less common cancers account for roughly a fifth of all diagnoses in Australia — and for a much larger share of cancer deaths, because fewer treatments have ever been tested for them. When there is no trial, no approved drug and no PBS listing, patients are left paying out of pocket or going without.
Mucinous ovarian cancer
~5 women a year in AustraliaSo rare that treatments proven for it barely exist. Often treated with protocols designed for other ovarian cancers, and frequently left off the PBS.
Where the work happens: Professor Kylie Gorringe — Peter MacCallum Cancer Centre
Appendiceal cancer & pseudomyxoma peritonei
Roughly 1–2 per millionAn ultra-rare malignancy that often spreads silently throughout the peritoneal cavity. Treated only in a small number of specialised surgical centres using cytoreductive surgery and heated intraperitoneal chemotherapy (HIPEC), alongside world-leading research into dissolving mucin (BromAc) to treat mucinous tumours that coat abdominal organs. Specialised peritonectomy units include St George Hospital in Sydney and Peter MacCallum Cancer Centre in Melbourne. Research funding for these rare presentations is almost entirely philanthropic.
Where the work happens: Professor David Morris — St George Hospital & UNSW, Sydney
Cholangiocarcinoma (bile duct)
About 1,000 Australians a yearUsually found late. Targeted options now exist for FGFR2 and IDH1 changes — which makes genomic testing at diagnosis critical.
Where the work happens: Research active at Peter Mac, Garvan and QIMR Berghofer
Sarcomas (bone & soft tissue)
Over 50 distinct subtypesEach subtype behaves differently, so trials are small and slow to recruit. Tissue banking and molecular profiling move it forward.
Where the work happens: ANZSA — Australia & New Zealand Sarcoma Association
Neuroendocrine tumours (NETs)
Diagnosis often takes 5+ yearsSlow-growing but frequently misdiagnosed. Theranostics research (Lutetium-177) is one of Australia's genuine strengths.
Where the work happens: NeuroEndocrine Cancer Australia, Peter Mac theranostics
DSRCT & other ultra-rare tumours
A handful of cases a yearToo rare for standard trials. Progress depends on registries, shared data and individual laboratory work.
Where the work happens: Rare Cancers Australia registry programs
The Jacinda Royale
A night held in Jacinda's honour, raising money for research into the rare cancer she faced. Cards, cocktails and a room full of people who refuse to let mucinous ovarian cancer stay invisible. Everyone is welcome.
When
Saturday 7 November 2026
6PM until late
Where
The Pillars
11 Barrack St, Sydney
Cocktail — dress like you mean it
Tickets
$250
Limited spots
Can't make the night? The ticket page has a Donations Only option at the bottom — enter 1 in the quantity field to proceed with a donation of any amount.
Funds raised go to the Peter MacCallum Cancer Foundation, directed to Professor Kylie Gorringe's research into mucinous ovarian cancer — the rare cancer Jacinda faced, which receives almost no dedicated funding.
Research & research centres
For a rare cancer, the most important specialist may be a researcher, not a local clinic. Find who studies your exact variant and ask your oncologist to contact them before treatment starts.
Professor Kylie Gorringe
Peter MacCallum Cancer Centre, Melbourne
Genomics and live patient tumour models (organoids) for mucinous ovarian cancer — including the HER2-positive subgroup. The lab Jacinda's biopsy was referred to. Peter Mac's Peritoneal Malignancy Service also offers cytoreductive surgery with heated chemotherapy (HIPEC) for suitable patients.
Visit the Gorringe Lab research page →Professor David Morris
St George Hospital & UNSW, Sydney
Leads St George Hospital's Surgical Oncology and Peritonectomy Unit — cytoreductive surgery with heated chemotherapy (HIPEC). Inventor of BromAc (bromelain + N-acetylcysteine), now in clinical trials to dissolve mucinous tumours that spread through the abdomen.
View Prof. Morris's research profile →Omico — PrOSPeCT precision oncology program
Australian Genomic Cancer Medicine Centre, national
Comprehensive genomic profiling for Australians with rare, less common or advanced cancers, matching patients to targeted treatments and clinical trials. Ask your oncologist whether you are eligible.
Omico — information for patients & families →Australian Cancer Trials
Cancer Australia (Australian Government)
Search government-registered cancer clinical trials across Australia, including rare cancers. Use the Question Prompt Lists to know what to ask your doctor about joining a trial.
Search Australian Cancer Trials →Australian Rare Cancer (ARC) Portal
Run from Peter MacCallum Cancer Centre, the ARC Portal lets your oncologist submit your case so national rare-cancer experts can review your diagnosis, molecular testing and trial options. It is not mandatory, so you may need to ask for it.
Ask: "Have you submitted my case to the ARC Portal, and have you contacted the lab researching my variant?"
Go to the ARC Portal →For patients & families | ARC Portal →Contact ARC Portal | Support, Referrals and Partnerships →Four steps that change your odds
Test before you treat
Discuss genetic and biomarker testing with your treating team as early as possible. Live culture (organoid) testing is not a standard process, but it can be arranged by your treating team — often through research labs or trials — to help improve patient outcomes.
Find the researcher who works on your exact cancer
Not just your organ — your subtype and biomarkers. Search their published work, then ask your oncologist for an introduction or referral.
Raise funds directly for that laboratory
Rare cancer labs run on philanthropy. Fully funding a dedicated research program costs about $370,000–$500,000 AUD a year (around $1.1M–$1.5M over 3 years). This covers a full-time lead postdoctoral researcher, laboratory technicians for daily tissue and organoid work, a bioinformatician to analyse genomic sequencing, experimental consumables (organoid media, drug screens, sequencing runs) and institute overheads. Jacinda's Quest takes no fee — 100% goes to the institution.
Share what you learn here
Every profile, treatment and outcome you publish becomes the map for the next person with your diagnosis.
Jacinda's Quest does not collect donations. Every campaign links you directly to the organisation running it, so your money goes straight to the research or project.