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“I have a primary immunodeficiency disease. It’s long and hard to pronounce.”

Calleigh of Ridley Park, PA is a bright 8-year-old girl with a positive attitude who loves dancing and cats. She is also living with hypogammaglobulinemia, a type of primary immunodeficiency disease (PI). As she grew, so did her number of illnesses—despite the previous hope that her disease diagnosed at infancy was transient (she would grow out of it).

Monitoring ACA Patient Protections

Last week, the Department of Justice announced that it will not defend several critical patient protections in the Affordable Care Act (ACA), including the protection against denial of coverage for individuals with pre-existing conditions, in a lawsuit in Texas federal court. The suit is led by 20 states challenging the ACA’s validity after the repeal of the individual mandate last year. Sixteen states have filed a brief defending the law, including protections for people with pre-existing conditions.

IDF Advocates Take on Washington, DC

IDF Advocacy Day 2018

On March 22, 2018, 49 advocates from the primary immunodeficiency disease (PI) community took to Capitol Hill to advocate for issues important to individuals with PI. IDF is grateful to have such passionate advocates whose motivation was not diminished by the snowstorm that unfortunately prevented some participants from being able to attend IDF 2018 Advocacy Day in Washington, DC.

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