My recommendations for EHE include the following online directories and support communities:
Current EHE News: The H.E.A.R.D. Registry (a previous resource for EHE) is not currently being maintained and emails there are no longer being responded to. Please visit the Cravat Foundation/which is a website/forum/foundation devoted to patients with vascular tumors.
EHE Facebook Group: Also there is the Epitheloid Hemangioendothelioma Facebook Group that has been steadily gaining members since September (currently there are over 600) and it is quite active. We have heard that there are several members of the group that have copies of and will share the HEARD Registry info with patients and their doctors.
EHE Research: Dr. Brian Rubin at the Cleveland Clinic has had a living EHE cell line for months on which he is actively testing treatments that could potentially mean a cure for EHE.
Here is information about his past research at the
Cleveland Clinic website.
Although the actual amount of money raised may not be up to date, here is the Cleveland Clinic's website regarding fundraising for Dr. Rubin's current research.
MyCSL EHE Group: The EHE Group on our online community, My Crazy Sexy Life, has some great information stored in past posts and there is the opportunity to connect with other members for questions and support. Please note that currently, it is not always very active.
Online Research: Researching EHE (type hemangioendothelioma) in PubMed from the US National Library of Medicine National Institutes of Health is also a useful resource.