H.E.A.R.D. stands for Hemangioedothelioma, Epithelioid Hemangioendothelioma (EHE), And Related vascular Disorders.
It is a support group established in 2004 to help these rare diseases. Hemangioendothelioma (HE) is the name for a composite group of vascular cancers, which can involve soft tissue, bone, skin, liver, lymph nodes and/or the lungs.
Due to the rarity of Hemangioendothelioma, it is preferable for patients to seek a sarcoma specialist for treatment.
There are only about twenty cases diagnosed each year of HE. The H.E.A.R.D support group has been able to locate about 120 people around the world who have this disease.
The members of this unique group tell us on the website:
Together, our voices will be HEARD!
1. I am a 34 yr old female just diagnosed with HEH wondering about others diagnosed and your current status and treatment?
Posted at 2:50PM on Sep 17th 2007 by Faith