Who we represent:
Our support group is called H.E.A.R.D which stands for Hemagioendothelioma, Epithelioid Hemangioendothelioma And Related Disorders (H.E.A.R.D.) The
H.E.A.R.D. Suppport Web site offers information and resources. Members share our history and treatment experience and offer moral support.
We're here to help:
There are only about 20 new cases of these rare vascular cancers diagnosed each year in America, but with the internet, location does not matter, and we have members in Europe and Australia as well. Our email address is
info@HEARDsupport.org. We welcome enquiries from anyone who needs support, or just wants to know that there are others who have this condition. It also helps to know what hospitals and which doctors these members attend.
Contact us:
Later on, it is helpful to share stories about different medications and discuss treatments and alternate approaches. Many doctors/oncologists will never come across a patient with hemangioendothelioma or epithelioid hemangioendothelioma in their lifetime. Please, contact us, and we can steer you in the right direction, provide support and advice, and assure you that this disease is not as scary as you first thought.
