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, and what factors dictate their location and severity. All these questions can be answered through focused research. This includes the development of living cell models to provide the material needed to test a wide range of hypotheses, and ultimately to evaluate different therapies.


The challenge of research

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. Our own investigations suggested that major cancer charities and organisations, including sarcoma-specific groups, are not funding research into EHE. But we have very good news on this front, because in 2010 a dedicated EHE research programme was initiated at the Cleveland Clinic in Ohio, USA. See the PROGRAMME OVERVIEW and PROGRAMME DETAILS pages in this section for more information. It is this research programme that the EHE Rare Cancer Charity (UK) is seeking to help fund through our funding objectives. See our FUNDING & RESEARCH page under WHAT WE DO for further information.


Research leader

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. In the short time since the programme started, the specific gene fusion and associated fusion protein that are associated   with EHE tumours have already been discovered. It is great news for EHE patients that a comprehensive research programme is already in progress, but the reality is that Dr Rubin's team is small. Providing Dr Rubin with additional funding so that his team can be expanded continues to be one of our key objectives. See the RESEARCHERS page in this section for further information about Dr Rubin and his collaborations.