President and Founder’s Message

I want to welcome you to the Immune Deficiency Foundation (IDF), the national non-profit patient organization for the primary immunodeficiency diseases. In 1980, a small group of us, both families and physicians, joined together and agreed there was an urgent need for a strong national patient organization dedicated to individuals affected by primary immunodeficiency diseases. Now, thirty years later, thousands of families, patients and medical professionals have joined our efforts to improve the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

From our inception, IDF created the first educational resources and programs for patients and families with primary immunodeficiency, and has launched many programs for healthcare professionals. IDF continues to listen to the needs of our community and develop resources to help solve these problems. All of the programs that you will read about on this site have been created in reaction to issues faced by our community, including the need for educational resources, answers to health insurance and reimbursement questions, access to optimal care and therapies, and improvement to the diagnosis and treatment of these diseases.

IDF has helped educate countless physicians on the recognition and diagnosis of these disorders, and has supported numerous training fellowships and research grants. Our advocacy efforts have mobilized all stakeholders in our community to stay in the forefront of issues that impact our patients and families. We have developed a wonderful peer support network of volunteers, and continue to initiate educational programs throughout the country.

When my son was diagnosed with a primary immunodeficiency disease in 1978, no organization existed and no materials were available for patients and families. Today, because many others have shared a common vision, we have been able to accomplish a great deal. However, the problems of diagnosis, treatment and access to care have not gone away, and much more needs to be done on behalf of our community. We encourage you to join our efforts by becoming involved in IDF, whether it is as a consumer of our services, a volunteer, or a philanthropic donor.

Welcome to IDF, and thank you for your interest. Thousands depend on IDF for information and education and I hope our website helps to fill your needs.

Sincerely,

Marcia Boyle

President & Founder