Accomplishments

 

hemochromatosis

anemia of chronic disease

dysmetabolic iron overload

Iron Disorders

Most people aren’t aware of our accomplishments

Iron Disorders Institute (IDI) was granted non-profit status in 1998. Every year for more than a decade, we have spent more than 90% of all income assisting people with iron disorders. We do this through our programs, services, publications and our own volunteerism.  Below are some highlights of our achievements that demonstrate how committed we are to our mission by making the very best use of our resources and your generosity.

IDI’s Accomplishments:

  • IDI obtained the first line item in the congressional budget dedicated to hemochromatosis education and training;
  • IDI established a 10-member board of directors, a 22-member Medical & Scientific Advisory Board and an 8-member Institutional Review Board (IRB);
  • IDI is the national advocacy partner with the US Centers for Disease Control and Prevention (CDC) for iron disorders
  • IDI has partnered in education and outreach with organizations such as The Arthritis Foundation, The American Red Cross and Private US Blood Centers;
  • IDI participated in discussions with the Department of Health and Human Services, Secretary of Health Blood Safety and Availability Advisory Committee resulting in the FDA variance for blood centers to accept hemochromatosis blood and the legislative efforts to protect people from genetic discrimination resulting in GINA 2008 (The Genetic Information Non-discrimination Act)
  • IDI obtained the first public statement about the importance of early detection and treatment of hemochromatosis iron overload from Dr. David Satcher who at the time was the assistant secretary of health and the US Surgeon General

 

  • IDI maintains two websites that together receive more than 8,000 unique visitors per week
  • IDI has been awarded eight Department of Health & Human Services grants
  • IDI conducts National July Hemochromatosis Awareness activities,
  • IDI has funded more than $200,000 for iron-related neurodegenerative disease research at Hershey (Penn State University);
  • IDI publishes a quarterly newsletter (nanograms),
  • IDI published a journal for physicians (id Insight),
  • IDI has written content for four iron related books, Guide to Anemia, Exposing the Hidden Dangers of Iron, Hemochromatosis Cookbook; Guide to Hemochromatosis (Publishers: Sourcebooks; Cumberland House Press);
  • IDI developed educational materials, record keeping forms and informational brochures such as: The Physician’s Desk Reference Charts for Hemochromatosis and for Iron Overload with Anemia; Guide to Phlebotomy, The HHC Starter Kit for “Newbies”, The Anemia Starter Kit,  About Transfusional Iron Overload; About Anemia and The Personal Health Profile.  All of these are available in downloadable PDF format, free to the public.
  • IDI has hosted 9 national/regional patient conferences

Our annual report highlights accomplishments by year and the percentage of funds use for overhead and staff (G&A).

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