Our goal is to combat EHE through the discovery of drug regimens and treatments that will allow us to manage and control EHE. To achieve this, we must first understand this rare cancer. We know that it can present in either an indolent (slow-growing) or an aggressive phase, but we do not yet know what dictates which phase is present, nor the trigger(s) that cause the indolent form to became aggressive, nor the reasons why it is often aggressive in children and young adults. We do not yet fully understand what causes EHE, what factors may lead to a person being predisposed to EHE, nor how it spreads within the body; nor do we understand the natural history of this cancer.
The EHE Rare Cancer Charity (UK) is therefore dedicated to promoting and supporting the research necessary to find the answers to these questions. In 2015 the only EHE-specific research programme was that led by Dr Brian Rubin from his research laboratories in the Cleveland Clinic in the USA, in collaboration with other American and international research facilities and cancer clinics. However, with greater awareness of EHE and funding for new research, provided by our charity and its sister foundations in Australia, the USA and an EHE sarcoma fund in Canada, we see other EHE-specific research now also underway in the USA, UK, Australia, and Canada. We are also seeing EHE accepted into a number of broader sarcoma research programmes. In addition, a research group in Holland has also concluded a Quality of Life PROM study of EHE patients worldwide, accessing EHe patients through our Facebook page.
Please go to our RESEARCH section for more information about Dr Rubin's research programme, our two UK projects, and other EHE research and initiatives that are underway or that we are promoting. An overview of the research and associated fundraising activities and objectives of the EHE Group can be found in our Annual Reports, with updates in editions of 'The Pledge', our quarterly newsletter, all of which can also be found in the RESOURCES section of this website.
We support the research programme in two important ways. First, our members can provide important data relating to themselves and their cancer. This is the type of patient data that typically is not available for rare cancers, and can provide critical information to medical and research specialists working with EHE. Second, research cannot progress if it is not funded. There is almost no government funding for research into rare cancers. Established charities and foundations also provide extremely limited funding at the early stages of such research. We will therefore continue to strive to raise from our members and from external sources the funds needed to allow EHE research to progress and lead to the understanding we need to combat this disease.