The EHE Rare Cancer Charity (UK), together with its two sister charities in the USA and Australia, has three main objectives at the core of everything we do. Our members have told us that these are the three areas that have had the greatest impact in their battle against rare cancer.
Diagnosis of a rare cancer usually leaves patients feeling shocked and profoundly fearful. Many people will have an urgent desire for information about their cancer, and want to engage with others with the same condition. Knowing you are not alone, engaging with others who have been living with the same cancer, and sharing their experiences can be powerfully supportive. We are dedicated to providing that support to people diagnosed with EHE, no matter where they live in the world, through our websites, and through our other social media forums, such as the EHE Facebook Page. We will strive to provide relevant information and news, directly or through connection to other sources of information, and thereby provide the support our members find so valuable. For further information on the support we provide, go to our PATIENT SUPPORT section.
Drugs and other forms of treatment to treat rare cancers such as EHE effectively can only be developed once the disease is better understood. We need to know the causes of the disease and identify the factors that initiate the cancer and lead to its development and spread in the body. This critical knowledge can only be gained through a coordinated programme of research undertaken by research specialists in centres of excellence. Our second objective is therefore to continue to raise funding from governments, other charitable foundations, the general public and our own members, and to seek to combine these funds with those from other cancer-related charities, to enable EHE-related research to progress at an acceptable pace. For further information on our research support, go to our RESEARCH section.
Great progress has been made in understanding and treating the more common soft-tissue cancers. We applaud these advances and encourage continued support of these research programmes. But of the total amount spent on cancer research, only a tiny percentage is spent on rarer forms of sarcoma cancer, even though 10% of cancer patients face these forms of the disease. Indeed, for some of the rarer sarcomas, such as EHE, almost no research is being undertaken. Our third objective is to act as an advocate for greater attention and expenditure to be given to researching these rare cancers. We aim to increase awareness of these cancers within governmental, medical and funding groups, and thereby ensure that we make progress in developing viable treatments and drug regimens for rare cancers.