H.E.A.R.D. is a support group established in 2004 to help people who have Hemangioendothelioma (HE), Epithelioid Hemangioendothelioma (EHE), And Related vascular Disorders.
There are only about 20 or so new cases diagnosed each year in America. To date, our support group has managed to locate over 270 people worldwide who have this condition. Three quarters of our members are from America, others are from all over the globe, including England, Australia, Canada, Italy, Spain, and Holland. There is at least one new enquiry every week!
As well as providing support for newly diagnosed and existing members, our other function is the maintenance of the International H.E.A.R.D. Registry, which records a brief medical history for each member.
This International H.E.A.R.D. Registry is confidential, and only sent to members, for their own (or their medical teams) use. This Registry has found recognition among treating doctors for its valuable contribition. Each year, several doctors contact me regarding treatment options for a patient, as they themselves rarely come across others who have this condition.
Unfortunately, the world health dollar does not extend to such a rare cancer, so it is up to us to help each other.
Together we have a stronger presence to present to the medical profession, and to the pharmaceutical companies, and to the rest of the world.
Together, we have the strength to expand the knowledge, and treatment, for hemangioendothelioma and other vascular disorders.
Together, our voices will be HEARD!
PLEASE REGISTER by contacting [email protected] for more information, and help yourself, and others, find out as much about hemangioendothelioma as possible. There is no charge, all that is needed is a willingness to share information.