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.

Here are some of the things we have done this past year and some things we will be working on this coming year:

• Partnered with the Iron Disorders Institute in promoting, mailing, and collecting data for the 2010 National Hemochromatosis Patient Survey. This was a combined effort with the US Centers for Disease Control & Prevention, (CDC) The Medical University of South Carolina (MUSC) and The Iron Disorders Institute (IDI). There were 949 completed surveys, many of which were people that we contacted.
• Update of our website.  This thing is really nice!  www.hemoinfo.org. Special thanks to Bo Bartlett and Lee Owens for their help.  The website is also much easier to update with new content. 
• Google AdWords is back up and running. We started running our ad on August 30 and since then we have had 653 clicks and 26,972 impressions.  The purpose of the ad is to increase awareness of hemochromatosis and drive people to our website so that they can get information they need.
• Creation of our national patient database.  We have created a national patient database where people can register to provide their contact information.  This will be important as we move forward with the patient survey we are developing. 
• Patient Survey. This is very exciting!  We are working with a PhD student at the University of Texas at Dallas to develop a patient survey.  The purpose of the survey is to determine the level of access that hemochromatosis patients have to treatment and to determine how much they are paying for the services they are receiving.  We also want to know how many patients are paying for services out-of-pocket versus those who are paying with insurance.  One of the challenges that patients with hemochromatosis face is finding a facility that will perform therapeutic phlebotomy treatment.  We suspect that oftentimes patients receive treatment at facilities that do not accept insurance and therefore must pay for services out-of-pocket.  If that is true, we may need to focus resources on policy initiatives to encourage those facilities to accept insurance payments.
• Advocacy. We sent letters to various members of the  House and Senate to advocate for funding for programs like the CDC and NIH.  We also sent a letter to the FDA regarding some proposed guidance that they had regarding regulatory requirements applicable to manufacturers of in vitro diagnostic products intended for Research Use Only (RUO) or Investigative Use Only (IUO).  We suspect that these regulations would have a negative impact on the ability of hospitals and clinical laboratories that use these products for clinical diagnosis of hemochromatosis.

1. Register in our national patient database at http://www.hemoinfo.org/2011/08/29/join-our-national-database/. That way we can get the survey to you once it is ready to go out.

2. Please comment on this post and let us know if you would prefer to receive the survey in paper format or electronically. This is an informal poll on which method will be preferred.  We may do one or both depending on the number of responses.

Also, we are working hard to keep the development cost of the survey as low as possible. However, there will be some monetary costs associated with the development and distribution of the survey.  If you would like to make a donation to the organization you can do so on our Donate page. As always we appreciate your support!!!!

Thanks!!!

Capital One developed the No Hassle Giving Site to provide Capital One credit card holders with a convenient way to donate to their favorite charities. Capital One has partnered with Network for Good and GuideStar to create the No Hassle Giving Site. Network for Good processes donations and disburses funds to selected charities. GuideStar provides a comprehensive database of public charities in the U.S. that are registered with the Internal Revenue Service (IRS).  Capital One and Network for Good have teamed up to ensure that 100% of your donation reaches our organization. Network for Good is a nonprofit organization that enables donations to 1.2 million charities. If you use your Capital One credit card, Capital One covers all transaction fees associated with credit card donations.

http://www.broadcause.com/Hemochromatosis-Information-Society

Thanks!

You can read the letter that we sent to the FDA Commissioner here.

This past year we have fought to increase or prevent cuts to funding for programs for hemochromatosis research (Letter to Sam Johnson ‐ R Texas).  We have advocated to protect individuals against genetic discrimination and to promote services for those suffering from this disorder.  We championed health care reform (Petition). We continue to work with other health advocacy organizations to influence critical national policy debates.

We are currently looking into several issues that may effect patients with hemochromatosis.  One issue concerns proposed changes by the Federal Drug Administration (FDA) regarding the use of in vitro diagnostic products labeled for research use only (RUO) or investigational use only (IUO).  The change would mean that products labeled RUO or IUO would not be allowed for use in clinical diagnosis or patient management. HIS is inquiring if this would have an impact on the various types of genetic screening that is used to diagnosis hereditary hemochromatosis.  In addition, in a letter from the American Hospital Association (AHA) to the FDA, the AHA warns that this change could impact the ability of hospitals to “identify compatible donors for transplant patients.” This would have a potential impact on hemochromatosis patients who may need organ transplants due to damage caused by excess iron. HIS is investigating the impact of the proposed changes and will decide shorty whether or not to send a letter to the FDA outlining our position.

Another issue concerns funding levels for the National Institutes of Health and the CDC.  These agencies may be subject to funding cuts based on political and fiscal issues in Washington, D.C. HIS will continue to reach out to members of the House of Representatives and the Senate to ensure that they are aware that we support full funding for these agencies so that they can continue to provide support to people with hemochromatosis.

HIS will continue to focus on issues that effect those suffering from hemochromatosis and to influence health policy at all levels.