The Immune Deficiency Foundation (IDF) started with volunteers. In 1980 Marcia Boyle co-founded IDF, the national nonprofit patient organization dedicated to people with primary immunodeficiency diseases (PI) after her son was diagnosed with a PI. Following his diagnosis, Marcia soon realized and was deeply concerned to find there were no educational materials and no advocacy groups for people with PI like her son John.
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Common misconceptions of primary immunodeficiency diseases (PI) are that individuals with these rare, chronic disorders are “allergic to the world” and they “live in a bubble.” With early diagnosis and appropriate treatment, most living with a PI can lead healthy and productive lives—with no need to shield themselves from the world.
National PI Awareness Month & World PI Week
Trying to explain that you have a primary immunodeficiency disease (PI) can be complicated, especially when many people haven’t heard of your disease before. While people may not learn overnight what PI is, there are ways to spread the word and raise awareness for PI.
CSL Behring has decided to discontinue the production of their Carimune NF intravenous immunoglobulin in the latter half of 2018.
Leave a Legacy for the PI Community: IDF Legacy Society
One of the most powerful ways you can help future generations affected by primary immunodeficiency diseases (PI) is to name IDF in your will. By doing so, you become a lasting part of IDF, the national patient organization dedicated to improving the diagnosis, treatment and quality of life of people with PI.
Ensuring Affordable Access to Care
As a rare disease community, those living with PI may find it difficult to get the lifesaving treatment they need through affordable rates and flat fee only co-pays. IDF works on the issues of co-pay and affordability on both a Federal and State level, but often the State level is where the issue gets met head-on and why IDF leads the charge for our community in states like Iowa.
It’s a simple question, yet it’s one that holds so much meaning: Why do you walk for PI? We like to ask the PI community this occasionally to hear from our community and understand what the walks mean to them. The answers are always inspiring and motivating, and help us remember just how important IDF Walk for PI is to those living with PI.
Why do you walk for PI?