The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases (PI) through advocacy, education and research.
There are approximately 250,000 people who are diagnosed with PI in the U.S., and thousands more go undetected. PI are a group of more than 300 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. Chronic Granulomatous Disease (CGD) is a type of PI. 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.
Individuals affected by PI often find it difficult to receive proper diagnosis, treatment and specialized healthcare. IDF estimates that the average length of time between 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 diseases depend on IDF for advocacy, education and empowerment.
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!