H.E.A.R.D. is a support group, originally established by Cynthia Pollak, In Melbourne, Australia, in 2002 to help people
diagnosed with Epithelioid Hemangioendothelioma (EHE).
There were no support groups, and very little research was being done. Cynthia was advised,
”EHE is such a rare disease, it’s not worth a share of the world’s health dollar!”
So Cynthia started her own research, which became a valuable tool for patients and doctors alike.
Thanks to the internet, word has spread, and there are now a few sites dedicated to supporting EHE – we are all working together,
from different angles – and there are several studies being conducted. All this information is included, or linked to, in the
But, we need YOU! We need your information in order to learn more about EHE, and to show the medical profession, and
pharmaceutical companies, that we do exist, and are looking for answers.
We currently have three databases in operation, to accumulate data on EHE patients, The H.E.A.R.D. Registry , CART-wheel, and
Patient CrossRoads. Each of these serves a different, valuable purpose, and we urge you to review, and hopefully contribute, to all.
Together, we have the strength to expand the knowledge, and treatment, for EHE, and make our voices be HEARD!
We need tissue samples!
Click here for more information