The challenge


The importance of research

To treat rare cancers, such as EHE, effectively, medical professionals need to understand why they occur, how they spread within the body, what biological processes are involved, what factors dictate their location and severity, and what treatment options may help in managing the disease. These questions can only be answered through focused research. This includes the development of living cell and animal models to provide the material needed to test a wide range of hypotheses, and ultimately to evaluate different therapies


The research challenge for ultra-rare cancers

Research programmes into common cancers are extensive, with very large patient groups for clinical trials, data-gathering and opportunities to obtain tissue samples. In the case of rare cancers, patients and tissue samples are, by definition, much more scarce. Research programmes into rare cancers are extremely limited and funding for them even more so. It often seems they are the ‘forgotten part’ of the cancer story. In many cases there may be no research taking place at all.


The positive news

There is however positive news on this front, because in 2010 a dedicated EHE research programme was initiated at the Cleveland Clinic in Ohio, USA, led by Dr Brian Rubin. See the PROGRAMME OVERVIEW and PROGRAMME DETAILS pages in this section for more information.

In addition, the establishment of the EHE Rare Cancer Charity UK, and its sister foundations in Australia and the USA, all in 2015, has allowed us to raise substantial funding and initiate dedicated EHE research in multiple centres. At the same time we have also been able to fund addition support for Dr Rubin’s research, with exciting progress being seen. We are continuing to encourage greater engagement with the research and medical communities while raising the further funding needed to drive this critical work.


Research progress

The Cleveland Clinic EHE research programme was initiated and is led today by Dr Brian Rubin, a widely and highly respected cancer research scientist. Dr Rubin is passionate about finding answers to the many questions about EHE. He is also committed to maintaining an open and collaborative programme with other cancer specialists and centres of expertise, to maximise the progress made from the limited funding available for EHE research.

In the short time since his programme started, the specific gene fusion and associated fusion protein that are associated with EHE tumours have already been discovered. It is excellent  news for EHE patients that Dr Rubin’s EHE-focused research programme was already in progress, but the reality is that Dr Rubin's team was small. Providing Dr Rubin with additional funding so that his team can expand continues to be one of our key objectives.

Dr Rubin’s collaborative approach has also led to other centres, in the USA and internationally, engaging in EHE research. Here in the UK we are delighted to have two EHE-dedicated research projects and an EHE tissue management and biobanking project all underway. Further projects are under active discussion.

Further details about these programmes can be found in the RESEARCH section of this website.