Founded in 2002, the Hemochromatosis Information Society has helped promote public awareness of hereditary hemochromatosis and saved countless lives. In 1998, Jason Edwards was diagnosed with hemochromatosis. He had never even heard of the disease and had no idea what it meant to his long term health. After receiving little guidance from his doctor, Jason began the process of researching what it meant to have hemochromatosis. He searched the internet for tangible information about where to go for phlebotomies, how to take care of himself, and what exactly he should be doing to cope with his illness. After struggling for months with doctors, insurance providers, and blood banks he finally got on track to managing his disease. In 2002, Jason decided that it was time to help others avoid the pitfalls and obstacles he had encountered.
The Hemochromatosis Information Society is a nonprofit organization providing valuable information to patients and physicians concerning hereditary hemochromatosis.
The mission of the Hemochromatosis Information Society is to promote public awareness about the genetic disorder hereditary hemochromatosis. The organization strives to meet the needs of those individuals, their families and friends diagnosed with hereditary hemochromatosis. In order to prevent adverse health effects and premature death, the Hemochromatosis Information Society supports routine screening of patients for hereditary hemochromatosis.
The Hemochromatosis Information Society operates in accordance with the Texas Non-Profit Corporation Act (“TNPCA”),and is governed by a board of directors.
The Hemochromatosis Information Society is a 501c3 organization. Your tax-deductible donation can be made on our Donations page or by clicking on the link below. Donations are used to provide information to the public via our website, through printed literature, creation and publication of PSA’s, awareness events, providing gentic test kits, and other activities. In addition, your support helps cover operating and administrative expenses incurred by the organization.
I just had a routine blood test for my drivers license and found my Ferritin level to be high (523). I have not been given any direction from my Doctor so should I be pursuing phlebotomies on my own?
I would definitley follow up with your doctor and get a complete iron panel blood workup. He or she should be able to write you some docotor’s orders so that you can get the phlebotomies, if needed. They can also do a genetic test for hemochromatosis if the blood work indicates that it is hemochromatosis.