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Primary immunodeficiencies (PI) are a group of more than 450 rare, chronic disorders in which part of the body's immune system is missing or functions improperly. Because one of the most important functions of the normal immune system is to protect us against infection, patients with PI commonly have an increased vulnerability to infections, which can be recurrent, unusually severe, or won't clear up. People with PI can face frequent health problems and often develop serious and debilitating illnesses.

While not contagious, these diseases are caused by hereditary or genetic defects, and although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. Some affect a single part of the immune system; others may affect one or more components of the system. And while the diseases may differ, they all share one common feature: each results from a defect in one of the functions of the body’s normal immune system.

Years ago, a diagnosis of a PI meant extremely compromised lives, not just for the patients but for their families as well. Today, with early diagnosis and appropriate therapies, many patients diagnosed with a PI can live healthy, productive lives.

The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency through fostering a community empowered by advocacy, education, and research. According to the National Institutes of Health, there are approximately 500,000 individuals in the U.S. with a primary immunodeficiency. Every year, thousands go undiagnosed.

Individuals affected by PI often find it difficult to receive a proper diagnosis, treatment, and specialized healthcare. IDF estimates that the average length of time between the onset of symptoms and diagnosis is between nine and 15 years. Patients also experience difficulties financing their healthcare, finding educational materials on the disease, and locating others with whom to share their experiences. IDF helps individuals overcome these difficulties.

IDF provides accurate and timely information for patients and families living with PI and offers valuable resources. IDF…

  • Helps the patient and medical community gain a broader understanding of PI through education and outreach efforts;
  • Promotes, participates in, and conducts research that has helped characterize PI and given patients and physicians substantially improved treatment options;
  • Addresses 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.

Thousands of individuals and families affected by PI depend on IDF for advocacy, education, and empowerment.

IDF does not charge patients or healthcare professionals for the educational materials or local programming that it provides. This is possible because of the generosity of the donors and sponsors who make unrestricted gifts to IDF.

Your gift to IDF will help provide vital resources to the PI community.

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The PI community often identifies with zebras. This is based on an old saying. 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!