patients Story

Our Story

The start

In 2013, three women in the USA, all with connections to EHE, found each other. They were each thrilled to actually meet the other two, finally connecting with others affected by the disease.  Realising that other EHE patients were almost certainly out there, they set up the EHE SUPPORT GROUP Facebook page. 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.  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 EHE SUPPORT GROUP Facebook Page and to facilitate fundraising to support Dr Rubin. In 2015, groups in the USA, UK and Australia each established their own independent charities/foundations. Coming out of the same EHE patient community, the three organisation have worked closely ever since, and call themselves collectively the EHE Group. The EHE Rare Cancer Charity was the UK entity.

Fundraising through 2015 and 2016 enabled the EHERCC to raise and donate significant 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. Fundraising has continued to surpass our expectations, and in August 2022 the EHERCC announced that its fundraising hads passed the £1 million mark.

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.  EHERCC considers itself a ‘sister’ charity of The EHE Foundation in the United States of America, The EHE Rare Cancer Foundation in Australia, and the more recently established Italian foundations EHE Italia Non Solo Laura. These four sister organisations, entirely independent, have the common goals of:

  • supporting and advocating for EHE patients worldwide;
  • raising funds to support critical EHE research; and
  • promoting and funding EHE Research.
Run and supported by patient families

The EHERCC is 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.