cancer research

Programme Overview

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. Political and commercial benefits means that these diseases also get a lot of focus from governments, the pharmaceutical industry, the media, and a lot of funding.

In the case of ultra-rare cancers however, patient numbers are tiny and tissue samples are, by definition, much more scarce. Research programmes into rare cancers are also 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, starting in 2010 when a small but dedicated EHE research programme was initiated at the Cleveland Clinic in Ohio, USA, led by Dr Brian Rubin. 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.

The following pages summarise the research programme that the EHERCC has been able to promote and support by providing the necessary funding, either on its own or jointly with its sister EHE foundations.