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).
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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.
Do you receive co-pay assistance from the manufacturer of your immunoglobulin replacement therapy or other necessary treatments, but those payments no longer count toward your deductible or out-of-pocket maximum? If so, IDF would like to hear from you.
IDF is pleased to announce the recipients of the 2018 IDF Research Grants, which support well-defined research projects that have a specified benefit for improving the treatment, health, disease management or diagnosis of people with primary immunodeficiency diseases (PI).
Understanding Allergies and Primary Immunodeficiency
By Joshua D. Milner, MD
National Institute of Allergy and Infectious Diseases, National Institutes of Health
We’re proud to announce the launch of the newly updated IDF Friends website!
Since 2009, IDF Friends has provided individuals with PI and their families with a supportive, private online community where members can post discussion topics, ask questions, share stories, get support, connect with others in similar situations and more.
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.
Are you ready to register? Registration for IDF Walk for Primary Immunodeficiency (PI) 2018 is officially open! You can now register and start getting your friends and family involved.
These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
Is Hypogammaglobulinemia the same as Common Variable Immune Deficiency (CVID)?