About the Immune Deficiency Foundation

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THINKZEBRA!In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras,” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with primary immunodeficiency (PI) are the zebras of the medical world. So the Immune Deficiency Foundation (IDF) says THINK ZEBRA!

Primary immunodeficiency diseases are a group of relatively rare conditions caused by intrinsic or genetic defects in the immune system. In fact, the World Health Organization recognizes more than 200 of these diseases that affect thousands of children and adults in the United States. Years ago, a diagnosis of a primary immunodeficiency meant extremely compromised lives, not just for the patients but for their families as well. Today, with early diagnosis and appropriate therapies, many patients with that same diagnosis can live healthy, productive lives.

One of the greatest challenges faced by individuals diagnosed with primary immunodeficiency disease is finding the right information and resources when they need it. With knowledge and foresight from their personal experience, IDF was founded by families of children with primary immunodeficiency diseases and their physicians to help meet those needs. It is with the spirit and energy of this keen perspective that IDF exists today, thriving as an organization dedicated to individuals living with primary immunodeficiencies.

Since 1980, IDF has provided accurate and timely information for the nearly quarter-million Americans who have been diagnosed with a primary immunodeficiency disease. Governed by a Board of Trustees – and supported by a Medical Advisory Committee comprised of some of the world’s leading clinical immunologists, as well as hundreds of grassroots volunteers and a compassionate, professional staff – IDF has provided individuals and their families with vital knowledge and made tremendous strides in:

  • Helping the patient and medical community gain a broader understanding of primary immunodeficiency diseases through education and outreach efforts;
  • Promoting, participating and funding research that has helped characterize primary immunodeficiency diseases and given patients and physicians substantially improved treatment options;
  • Addressing patient needs through public policy programs by focusing on issues such as insurance reimbursement, patient confidentiality, ensuring the safety and availability of immunoglobulin therapy, and maintaining and enhancing patient access to treatment options.

Today, thousands of individuals and families affected by primary immunodeficiency diseases depend on IDF for advocacy, education and empowerment.