Episode 45: July 10, 2019 - Expand Your Understanding of Primary Immunodeficiency Diseases

Primary immunodeficiency diseases affect more than 250,000 people in the United States. Learn how the Immune Deficiency Foundation is dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiencies.

John G. Boyle

President and CEO of the Immune Deficiency Foundation (IDF)

John G. Boyle is the president and CEO of the Immune Deficiency Foundation (IDF). He has been instrumental in developing a number of new initiatives for the Foundation, including the IDF Walk for Primary Immunodeficiency (PI) that launched in 2013, and securing more than $4 million in funding that supports vital IDF programs, resources, and research grants. John was diagnosed with a PI disease as an infant, specifically X-linked Agammaglobulinemia. He has received immunoglobulin replacement therapy ever since and has devoted his career to serving nonprofit organizations. John previously served as IDF’s vice president of external relations and has also worked for Children’s National Medical Center and the Platelet Disorder Support Association. He holds a bachelor’s degree from Boston University and master’s degree in nonprofit management from Notre Dame of Maryland University.

Host: Dawn Berndt, DNP, RN, CRNI® – INS Infusion Nurse Educator

Guest: John G. Boyle - President & CEO of the Immune Deficiency Foundation

Primary immunodeficiency diseases (PI) are a group of more than 350 rare, chronic disorders in which part of the body's immune system is missing or functions improperly. There are approximately 250,000 people who are diagnosed with PI in the United States. People with PI can face frequent health problems and often develop serious and debilitating illnesses. 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. Listen as John Boyle, President and CEO of the Immune Deficiency Foundation (IDF), tells his story and describes the work of IDF.

Founded in 1980, IDF is the national nonprofit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with PI through advocacy, education and research. 

Resources:
https://primaryimmune.org/ 

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