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Blood Variance and Hemochromatosis: Iron News from the Iron Disorders Institute

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This is just a quick post to remind folks that the Iron Disorders Institute (IDI) has a ton of information about hereditary hemochromatosis. You will find a lot of useful documents in the library on the IDI website.

You can also get their monthly newsletter via email. Here's a link to the latest issue in which Executive Director, Cheryl Garrison, provides a very helpful update on what happens to "hemochromatosis blood"... that's the blood drawn from people with hemochromatosis to reduce excessive iron levels.

As the IDI notes, the FDA has published a Final Rule called “Requirements for Blood and Blood Components Intended for Transfusion for Further Manufacturing Use.” Among the many changes included in this Final Rule is "the elimination of the need for a variance if a blood bank will be using blood for a hemochromatosis (HH) patient." For what all that means for folks who are getting phlebotomies to regulate their iron, check out the Iron News.

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HFE testing: an open letter to the American College of Medical Genetics and Genomics

Dear American College of Medical Genetics and Genomics:

According to a recent article on GenomeWeb your organization, the ACMG has declared that: "HFE testing shouldn't be ordered for patients who don't have iron overload or a family history of HFE-related hereditary hemochromatosis." Frankly, this is some of the worst medical advice I've ever seen published, it defies the logic of real life, and does so in a way that reinforces a number of medical stereotypes.

I invite the ACMG to address the following five realities as they relate to the two limited conditions under which your organization would permit people to find out whether or not they are carriers of a potentially crippling and deadly genetic condition, otherwise know as HFE testing.
A. Re: "a family history of HFE-related hereditary hemochromatosis"
In your version of reality, how do people know if they have a family history of HFE-related hereditary hemochromatosis (HHC)? In the real world, many p…