11 Million Americans or more have the genes that can result in too much iron.


Iron deficiency with and without anemia are a key focus areas for Iron Disorders Institute.


Accounting Practices:

Iron Disorders Institute is a registered 501(c)3 organization. All financial information about the organization is a matter of public record and is available upon request or may be viewed through the South Carolina Secretary of State or GuideStar websites. IDI follows generally accepted accounting practices (GAAP) and the accrual accounting method. IDI produces an annual report, and provides certifications and assurances that the organization is compliant with all state and federal requirements.                                                                    

Iron Disorders Institute Privacy of Information Policy

Personal Information

Iron Disorders Institute (IDI) is committed to helping patients and their families with the highest regard for their privacy. IDI does not market for personal gain the names, email addresses or contact information of any person registering on our web sites, or who have communicated with IDI by email responded to announcement, provided credit card information, participated in online surveys or any other activity where personal identifiers are given to IDI.  We protect all data with state-of the art security programs and assure policies and practice guidelines of The Health Insurance Portability and Accountability Act (HIPAA).

All personal information collected from you through our website(s), email, written correspondence, fax or telephone conversation is kept confidential and not shared without your permission, which may be obtained through a signed “Talent/Photo Waiver” or its equivalent (letter, fax, email). You may request that all personal information be removed or you may decline to provide any information about your health or personal identifiers.

Internet Privacy:

GDRP Compliance:
In accordance with the European Union GDRP Compliance, Iron Disorders Institute will only collect information from you (the user) if you provide it. No information will be obtained without your knowledge or consent. The information obtained will be used correspond with you about iron-related questions and/or to process a donation. This information may include the following: Your Name, Address, Phone Number, Email Address, Credit Card/Payment information, and any other miscellaneous information you wish to share with Iron Disorders Institute. Iron Disorders Institute will not add your name to any mailing lists without your consent. Your information will be used strictly to acknowledge your specific requests. Your information will not be sold to a third party. Iron Disorders Institute will retain your information for a necessary amount of time to process any requests that you have. If you wish to have your information removed from our databases, please click here and opt out.


A “cookie” is a small text file that is sent to your computer’s hard drive while you are visiting a web site.  Iron Disorders Institute (IDI) uses cookies to verify your identity and to give you faster loading and reloading of pages on our site. IDI does not use cookies to collect any personal information about you or from your computer.

Log Files

Iron Disorders Institute keeps certain non-personal information in our web logs, such as: an IP address (Internet Protocol address), browser type (e.g., whether you use Firefox, Netscape or Internet Explorer), the page requested, how long you remain on a page and the time of each page request. We collect this non-personal information to evaluate the website activity such as the number of hits and sessions, which pages are visited most, which days of the week or month are most active. These data help us to analyze trends to provide better service. This information is not connected to any personally identifiable information, such as a name or address. This information may be shared but only in aggregate form such as a monthly report of web activity and site performance.


Users should be aware that e-mail is not necessarily secure against interception and that any information considered sensitive by the user should be delivered to IDI by fax or surface mail.

Changes to this policy and Use of the Web Site

To assure Iron Disorders Institute is compliant with privacy issues and new laws that may be generated to do so, the IDI reserves the right change its policy at any time. Users may view these changes in policy on our web site. By using IDI’s web sites, you agree to the provisions of our privacy policy and to the collection and use of information as described in this policy.

Participation in the IDI online discussion group or forum

Discussion-based venues allow for the free exchange of information and communication on a given subject. IDI maintains guidelines for users or members of our discussion list or forum but IDI cannot prevent unsolicited e-mails as a result of your participation in these venues.  


Content in this publication is not intended to be a substitute for professional medical advice, nor is it intended to replace the services of a medical professional or impair the patient-healthcare provider or caregiver relationship. Content in this publication should be used as information only and be discussed with a medical professional that is the only one qualified to diagnose and treat your condition. No representative of Iron Disorders Institute is responsible for the content on Websites listed in the resources, linked to or from our site. Nor do we endorse products promoted on such sites. We advise you to always seek the advice of a qualified health provider before making any changes to diet, supplementation or starting any new treatment. Any application of the information or recommendations on this site are made at the visitor’s discretion.



We've partnered with Accesa Labs to make iron tests convenient and affordable.



Gerry Koenig’s Story required 2 liver transplantations due to misdiagnosis.



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