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
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
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 following pages.
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