support for cancer patients

Patient support

“When I was told I had EHE, I was desperate for information and to meet fellow patients. I found both through the UK EHE charity. I now have access to a truly global EHE community through the EHE Support Group Facebook page, and to a hugely supportive WhatsApp group much closer to home. I love these guys.”

Our patient community

Our global patient community was established through social media, using the EHE Support Group Facebook page. Originally started in 2013 by just three women, this page now connects over 2,600 members representing more than 85 countries, providing a unique community for such a rare cancer. This community is a wonderful source of information, experience, support, encouragement and love for all who engage with it.

The EHE sister charities, which includes the EHE Rare Cancer Charity (UK), the EHE Foundation in the USA, EHE Rare Cancer Foundation (Australia),  and EHE Italia Non Solo Laura in Italy, all came out of the EHE Support Group Facebook page. We also have active patient communities in Canada, Germany, Denmark, with others forming in other countries. All of these groups have been established and are supported by EHE patients and their families and friends.

This group of people who are all living with EHE provide a unique support structure to all concerned. Contactable through this website or through the group’s confidential closed EHE Support Group 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 or have only recently found us then please see below 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.

Patient forums

Many people with ultra-rare conditions feel isolated and lonely. They are keen to engage with other EHE patients, but due to the ultra-rare nature of EHE, it is very unlikely that they will find other EHE patients where they live. This was why the EHE Support Group Facebook page is so important, bringing EHE patients together from across the globe. Our members are always amazed at how close they become to people in the group, despite never having met the. So patient forums and/or one-on-one discussions help patients interact with others in the same situation, regardless of where they live. If you have been recently diagnosed with EHE, we encourage you to join our forums and become part of our EHE family. The EHE Support Group Facebook page can be found at www.facebook.com/groups/EHEcancer.

At the core of our charity are our members who have been diagnosed with EHE, and their families and friends. Many of these openly engage in discussions on a wide range of topics associated with EHE, sharing valuable information and experiences, and providing mutual support.

Privacy maintained

For some people, confidentiality and privacy are very important. The EHE Support Group Facebook page is a closed group for this very reason. But engaging in open discussions even in a confidential Facebook page can be stressful for some people. However, there are other ways to participate. Many of our members are happy to engage through offline private communications, using social media messaging systems, email, or telephone and video conferencing. This is not something that the EHERCC can deliver as it is up to every individual as to whether they want to engage, and if so, when and how. But generally, we find most of our community ready to interact and help fellow patients, so please don’t hesitate to reach out.