Rare cancer under the microscope
Rare cancers make up a quarter of diagnoses but receive less funding, fewer treatments and are often diagnosed late.
Around 1 in 5 cancers are classified as rare. They make up a quarter of all cancer diagnoses and cause around 30 per cent of cancer deaths. However, given they are considered rare, they receive less funding and research, fewer treatment options, and are often diagnosed too late. Patients can be left with uncertainty, limited support and poorer outcomes.
Epithelioid Hemangio-endothelioma (EHE) is one of the rarest cancers in the world, with fewer than 1 person per million diagnosed each year. It starts in the cells that line blood vessels and can occur anywhere in the body. There is no standard cure, and treatment options are limited.
Jonathan Granek was diagnosed with EHE in 2009 when he was only 26 years old. He shared his personal story on Sunday at an event to raise awareness about EHE. Granek said that it took many months of medical tests before he was able to receive a diagnosis of stage 4 EHE, and was then given a grim assessment by his doctor.
“She went on and clarified there was no established treatment regimen to cure me, that existing therapies available were relatively toxic and known to only have limited effect before tumours became resistant. The rate of progression of disease was unpredictable, but I would almost certainly experience a shortened lifespan as a result of my disease.”
Granek expressed the personal weight of the diagnosis, “I felt like I was in very deep water, without a life raft and no paddle. I was 26 years old, and was just starting out my adult life, and suddenly I felt like it was already ending. The diagnosis shattered my engagement, changed friendships and forced me to reimagine my future.
“What’s more, the reality of my situation and the thought that things may worsen at a moment’s notice made me feel alone, hopeless, anxious and frustrated.”
Granek turned his pain into purpose, becoming a consumer representative and co-founding the EHE Rare Cancer Foundation Australia (EHE-RCFA) in 2015, a patient-led not-for-profit with deductible gift recipient (DGR) status, which seeks to share facts about EHE and rally support for the advancement of EHE research. It works with international sister EHE foundations in the US, UK, Canada, Italy and Germany.
In addition to his work in property development management and construction advisory consulting and as a husband and father of two daughters, Granek also sits on a range of committees including the Peter MacCallum (PM) Cancer Centre’s Research Consumer Engagement Program Board and the PM Community Advisory Committee and is a member of the Victorian Comprehensive Cancer Centre Alliance’s Precision Oncology Consumer Reference Group.
April is EHE awareness month, and the EHE-RCFA held an awareness event on April 19 at Caulfield Park Pavilion. Granek called on the community to help raise support for the fight against EHE and cancer.
EHE-RCFA is determined to transform EHE from a life-threatening diagnosis into a treatable and ultimately curable disease. It hopes that raising EHE awareness will lead to shorter diagnostic journeys; global scientific collaboration among researchers and clinicians; improved patient outcomes; expanded global advocacy and more cooperative projects; increased research funding; and improved patient support both in everyday life and in the clinic.
The EHE-RCFA has funded leading researchers at world-class institutions including the Peter MacCallum Cancer Centre (Australia); Garvan Institute (Australia); Cleveland Clinic (US); Memorial Sloan Kettering (US) and Albany Medical College (US). Research into EHE is also helping advance research into other cancers.
During the event, Granek interviewed Professor Kieran Harvey, who has received grants from the EHE-RCFA, and who discussed his research into the Hippo pathway, a major cancer pathway for EHE as well as many common cancers.
“The Hippo pathway is an information relay. So, it’s taking messages from the top of the cell inside, to tell that cell to do different things, whether that is to die or to divide and make a new cell,” Harvey explained.
“It’s like a little molecular machine that does work. When I was a postdoc in the US, we were part of a group that discovered that pathway, which was a big deal at the time, but we also found out that it’s really important for cancer, and it’s mutated in many different cancers, so probably 30 or 40 different cancers.”
Discussing the importance of medical research into cancer, Harvey noted that the Australian government has a Medical Research Future Fund containing around $20 billion, from which it had promised to hand out $1 billion per year for medical research, but to date, the full amount has not been distributed. Harvey called on the community to advocate for the release of the funding.
Meanwhile, EHE-RCFA continues to encourage research which it hopes will not only create a cure for EHE but other cancers as well.
To support visit: https://shoutforgood.com/fundraisers/ehe-awareness-month-2026-appeal