Care and support


Our charities

The EHE sister charities, which includes the EHE Rare Cancer Charity (UK), the EHE Foundation in the USA and the EHE Rare Cancer Foundation (Australia),  have been established and are supported by EHE patients and their families and friends all over the world. This group of people who are all living with rare cancer provide a unique support structure to all concerned. Contactable through this website or through the group’s confidential closed EHE Facebook Page, newly diagnosed patients can ask questions, get feedback and advice, share their fears and frustrations, and ultimately receive the love and support of fellow EHE cancer sufferers.


Patient support

If you have been recently diagnosed with EHE then please go to our PATIENT SUPPORT section for further details on how to contact and join our ‘EHE family’. You will find a huge amount of support and information there. Remember, you are not alone. As one of our new members said:

“I was recently diagnosed with EHE and found your Facebook group one evening while looking for information. I started to read and could not stop. Before I knew it, it was morning. I am so happy to have found you all!”

In addition to the interactive support we provide, we also provide updates on the research we are sponsoring, and the content and results of our advocacy programme, providing all our members with hope and encouragement that real progress is being made.