Patient registry & samples


Patient registry

A key component in our overall fight against EHE is the confidential EHE Patient Registry that we continue to build. This registry has been established, in collaboration with medical and research specialists, to collate important social and medical information and data from all patients diagnosed with EHE. The collation of these data is invaluable for research and medical specialists as they look for statistically significant trends that will improve understanding of EHE.

We strongly encourage all new patients to join the Registry and provide their information to the growing data base. The Registry is held on the CRAVAT website at what is called the Patient Crossroads. The following link will connect you to the Registry where you can create an account and enter your details.


Registry Link


Tissue samples

In addition to the Patient Registry information, our members are also providing tissue samples to the international EHE research programme led by Dr Brian Rubin (see our RESEARCH section). A key component of Dr Rubin’s research is the development of cell models to test development and treatment hypotheses relating to EHE. If you are an EHE patient and your treatment will involve the surgical removal of tumour tissue, please consider donating this tissue for use in the research programme. If you do want your tissue samples to reach Dr Rubin, you should contact Dr Rubin or ourselves in advance of surgery, using the contacts below, to discuss how the tissue samples may be made available to Dr Rubin. Finally, and although a difficult issue to consider, we have also had members who, on losing their fight against EHE, have left their organs for use in Dr Rubin’s research programme in the hope that these may lead to advances in understanding and combatting EHE. Again, contact with ourselves or directly with Dr Rubin using the contacts below can help in making all the appropriate arrangements.



Contact EHERCC through our CONTACT page.

Contact Dr Rubin through his email address at: