About the Immune Deficiency Foundation

The Immune Deficiency Foundation (IDF) is the national non-profit health organization dedicated to improving the diagnosis and treatment of primary immune deficiency diseases through research and education. IDF is governed by a Board of Trustees, has an active Medical Advisory Committee comprised of prominent clinical immunologists, a nationwide volunteer support network, and a dedicated professional staff.

There are as many as 50,000 people who have a primary immune deficiency disease in the United States. These individuals live throughout the country and often find it difficult to receive specialized health care, and proper diagnosis and treatment. Individuals affected by primary immune deficiency diseases also experience difficulties financing their health care, finding educational materials on the disease, and locating others with whom to share their experiences. The goal of IDF is to help individuals overcome these difficulties and live a healthy and productive life.

IDF was founded in 1980 by parents of primary immune deficient children and their physicians. At that time, there were few treatments for many primary immune deficiency diseases, and the treatments that were available were painful and not very effective. There were no educational materials for patients, no public advocacy initiatives, and little research being done. Over the past 23 years, IDF has worked on these issues and made tremendous strides in the following areas:

  • Helping the patient and medical community gain a broader understanding of primary immune deficiency diseases through our education and outreach efforts;

  • Promoting, participating, and funding research that has helped characterize primary immune deficiency diseases and given patients and physicians substantially improved treatment options;

  • Addressing patient needs through our public policy programs on a national level by focusing on issues such as insurance reimbursement, patient confidentiality, preventing genetic discrimination, ensuring the safety and availability of IGIV, and maintaining and enhancing patient access to treatment options.

As a result of the efforts of the Immune Deficiency Foundation, thousands of individuals and families affected by primary immune deficiency diseases can count on ongoing support of groundbreaking research, continuing education and peer support programs, and tireless advocacy at local and national levels.