The EHE Rare Cancer Charity (EHERCC) was set up in 2015 to help people diagnosed with Epithelioid Haemangioendothelioma (EHE), an ultra-rare sarcoma and one of the rarest cancers known. The charity was set up in the UK by the UK members of the EHE Facebook page, which was started in 2013 and today has over 1700 members worldwide in over 65 countries. It is the only EHE social media site we are aware of, as in individual countries the EHE community is often very small. In addition to the EHERCC, sister foundations in the USA and Australia were also set up in 2015 with the same overall goals and objectives.
The charity has three key objectives, namely patient support, advocating for greater awareness and engagement with EHE, and fundraising to drive critical research needed to understand this disease as very little is known about EHE and its biology. There is no effective systemic treatment, and in its progressive and aggressive state EHE is destructive and often fatal.
Sadly, like most rare diseases, there is very little funding for research into EHE. As a result, until 2015, there was only one researcher in the world dedicated to EHE research, Dr Brian Rubin based at the Cleveland Clinic in the USA. Today, as a result of the fantastic support we and our sister foundations have received, we have multiple research projects underway in the UK, USA, Canada, Australia and Europe. This research is already producing exciting results and we hope that in the not too distant future may start to identify genuine treatment options for the EHE community worldwide.
Patient support is provided through our different EHE Facebook communities. These are closed groups accessing to EHE patients and their supporters worldwide. The support is largely provided by other EHE patients who collectively can provide first hand knowledge of the different drugs and treatment protocols available. But we are not doctors. Medical care and advice must come from a patient's oncology team. What we can provide is information and experience of other patients that we hope enables our members to have a more informed and positive discussion with their doctors.
Fundraising is coordinate by the charity but is mostly run by our UK patients and thei support networks. We have also received wonderfully generous support from companies and other foundations and charitable organisations. Since 2015 we have raised over £750,000 in the UK alone for EHE research. That performance far exceeds our original expectations, but there is still so much we need to do and so we cannot relax. At the current time the charity is initiated a full fundraising strategy review to identify additional fundraising programmes that will enable us to find other important research.
Advocacy is largely delivered through our Trustees and the different organisations and groups that we engage with. Our message is imply to encourage the government and other state holders to give greater time and awareness to sarcomas and EHE in particular.
