Resources – Disorders Treated with IG

Primary Immune Deficiency Disease (PI)

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PI occur in persons born with an immune system that is either absent or hampered in its ability to function. There are more than 150 PIs — some are relatively common, others are quite rare — which result in patients commonly having an increased susceptibility to infection.

Websites

• American Academy of Allergy, Asthma & Immunology has a helpful Q&A section on its website, with resources and tips for those with various immune deficiencies.
• Immune Deficiency Foundation (IDF)
  is dedicated to improving the diagnosis and treatment of PI through research and education.
• International Patient Organization for Primary Immunodeficiencies (IPOPI) promotes the worldwide improvement in the care and treatment of PI patients.
• Jeffrey Modell Foundation is dedicated to early and precise diagnosis, meaningful treatments and, ultimately, cures for PI.
• National Institute of Child Health and Human Development (NICHD) is part of the National Institutes of Health. Go to the "Health Information and Media" tab on the website and do a search under "primary immunodeficiency."
• Takeda's website offers in-depth information on immunology, PI and choosing a therapy.
• The Yellow Bear Foundation
  This nonprofit organization empowers communities to increase awareness and fund research for PI.
• Treating PI.com is a resource created by CSL Behring for PI patients.

Support Groups

• A chat group for all ages - Yahoo PID Support Group
• A group of family and friends of patients with primary immune deficiencies maintains a nonprofit network in the New England area.
• Connect with the Jeffrey Modell Foundation Facebook Page .
• Chat with peers on IDF's Forum.
• Chat with parents of children affected by primary immune deficiency.
• Rhode Island peer group

Online Pamphlets and Education

• Go to the National Institute of Allergy and Infectious Diseases site and search for "primary immune deficiency."
• "NIAID Initiative Addresses Primary Immune Deficiency Diseases by National Institute of Allergy and Infectious Diseases"
• The "Immunodeficiency in Pediatrics" program or the PREP^® Audio series is a new pediatrician education program that can be obtained by contacting the American Academy of Pediatrics at 866-843-2271 or visiting www.prepaudio.org.
• "Understanding the Immune System: How It Works," by the U.S. Department of Health and Human Services.