Epithelioid Hemangioendothelioma (EHE) Cancer

***Please add your information to our new EHE patient registry at: https://connect.patientcrossroads.org/?org=cravat. Family members of patients who can't register on their own or who have passed away are welcome to join on their behalf. Every piece of data we can get is vital to finding effective treatments or a possible cure ****

Hello and welcome! This group is for epithelioid hemangioendothelioma (EHE) cancer fighters/survivors, caregivers, friends, and medical professionals. Per Wikipedia, epithelioid hemangioendothelioma (EHE or eHAE) is a rare tumor that typically strikes both women and men who are in their 20s through their 40s. EHE is a vascular cancer, often growing in the liver, lungs, and within the veins of arms and legs. However, it can be found in other locations throughout the body, including the mediastinal region of the chest, in skin and other organs, and also in bones. The prognosis varies for those diagnosed, with many living successfully with the disease while others do not survive.

What is universal is that EHE fighters/survivors are scattered across the globe, and often never have the opportunity to connect with someone else who is fighting the same disease. This group hopes to change that! We want to be a source of support for those fighting the disease as well as those who love them. We also want to raise awareness of this rare form of cancer and advocate for a cure while being a source of knowledge and resources. You do not have to fight this battle alone, we all fight together!

This FB group reflects numerous positive steps that are being made in the awareness, identification, and treatment of EHE. Please check out the links at the top of the page for additional information such as the status of research breakthroughs made by Dr. Brian Rubin at Cleveland Clinic; fundamental information about EHE from CRAVAT (Center for Research and Analysis of VAscular Tumors) Foundation; and of course, PLEASE take a moment to register your information at our new EHE patient registry.

NEWLY DIAGNOSED? Please click on this link: http://www.cravatfoundation.org/newly-diagnosed/ to find key information that will be helpful. Our members bring diverse experiences and information to this group. Please remember that postings on this site are NOT MEDICAL ADVICE and should not be taken as such! Your doctor or doctors should always be the final authority on your treatment measures, supplements, etc. However, we encourage you to educate yourself about this disease, possible treatments and to ask questions in order to have open and honest conversations with your doctors.

CALL FOR VOLUNTEERS: Would you like to become more involved in the fight to end EHE? We need volunteers as we seek to reach and help others with this rare disease. Please contact a member of the EHE Leadership Team to ask how you can help: Dawn R. Scott, Gayla Loller, Guy Weinberg, Cynthia Lee, Jane Gutkovitch and Jono Granek. Thank you!