Our story


The start

In 2012, one of our US members, Jane Gutkovich, was faced with an EHE diagnosis of her son. Jane started to research this rare cancer. Her passion and dedication led to interaction with other patients in the USA and from there our FACEBOOK PAGE was established. This led quickly to engagement with many other patients around the world and over the following two years several hundred joined this patient forum.


Need for funding

Over the same period the group began to interact with Dr Brian Rubin, Professor of Pathology at the Cleveland Clinic, and the only medical researcher leading a dedicated team working on EHE (see our RESEARCH section).  The group became focused on the need to support this critical research and in 2014 the decision was taken to establish charities to build on the momentum of the Facebook Page and to facilitate fundraising to support Dr Rubin. In 2015, the EHE sister charities were established in the UK, USA and Australia. Fundraising through 2015 and 2016 has enabled the EHE charities to raise and donate signficant funds to Dr Rubin's research programme, including enabling him to recruit a new lab technician and towards the end of 2016, a new post-doctorate researcher, thanks to receiving a grant of $180,000 from EHERCC. Fundraising for 2017 is now in full swing as EHERCC sets out to first match and then exceed the funds raised in 2016.


The UK charity

The EHE Rare Cancer Charity (UK) is registered with the UK Charity Commission (with Charity Registration No. 1162472) and with Her Majesty’s Revenue and Customs and is a ‘sister’ charity of The EHE Foundation in the United States of America and The EHE Rare Cancer Foundation in Australia. These three sister organisations, entirely independent, have the common goals of:

  • supporting EHE patients worldwide;
  • raising funds to support critical EHE research; and
  • acting as advocates for EHE awareness and engagement.


Run and supported by patient families

The EHE sister charities are supported by EHE patients and their families and friends. They bring the energy, enthusiasm and dedication that come from people who are directly affected by the cancer we are fighting. We remain grateful to all our supporters for their ongoing support and enthusiasm. We hope you will join them and help us to fight EHE.