UK: EHE Rare Cancer Charity

Organisation

Epithelioid Haemangioendothelioma (EHE) is an indiscriminate and often destructive cancer occurring in men or woman at any age and which is often aggressive in children and young adults. We know little about this rare sarcoma which is why research is so critical. Yet because of its rarity, affecting one person in every 2.5 million, there is no funding from governments or the pharmaceutical industry, for research into this cancer.

The EHE Rare Cancer Charity (UK), also known as EHERCC, was set up in 2015 to help and support patients with EHE, to advocate for greater support and awareness of EHE, and to fundraise for and drive research into this rare sarcoma. The charity is run purely by volunteers with all charity running costs covered by a single donor. That means that 100% of the funds we receive from our wonderful supporters can be dedicated to EHE research.

The EHERCC is also part of a global group of EHE foundations that today includes USA, Australia, Canada, and Italy. Although the EHE foundations are all independent entities, all five came out of the same global EHE Facebook group that today has over 2,100 members in 78 countries around the world. With a disease as rare as EHE, our Facebook page provides an almost unique opportunity for patients to come together, share experiences, and compare notes and the results of their different treatments, while providing each other with priceless support and encouragement. It also allows us to gather critical patient information in meaningful numbers, to help drive research.

EHERCC is funding several research projects in the UK, as well as research in the USA, and our first collaborative research between Europe and the UK, involving INT in Milan and the ICR in London. We have also funded and launched the National UK EHE Biobank, based at the Royal Marsden Hospital. EHERCC is now embarking on an expansion to contact and connect EHE patients across Europe, creating a network of involvement and support for European EHE patients.

For more about EHERCC, please go to our website at: www.ehercc.org.uk