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June 18 2018
Awareness, Community, Plasma Partners Program, Volunteer

Raising PI Awareness at a Newly Opened CSL Plasma Center

POSTED BY: kmcmahon

Jessica Goddard is a member of the IDF community and is living with Common Variable Immune Deficiency (CVID). As a way to raise awareness of primary immunodeficiency diseases among plasma donors and centers, Jessica volunteers as an IDF Plasma Awareness Coordinator. Recently, a new CSL Plasma donation center opened in Columbia, South Carolina.

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June 15 2018
Advocacy, Healthcare Reform, Medicare

Monitoring ACA Patient Protections

POSTED BY: rdelaney

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

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June 14 2018
Advocacy, Awareness, Community, Volunteer

IDF Volunteer Rashann Fontenot: A Voice for Change

POSTED BY: kmcmahon

The advocacy efforts of the Immune Deficiency Foundation (IDF) are critically important in helping to shape public policy that impacts people living with primary immunodeficiency diseases (PI)—from Medicare issues to high out-of-pocket costs, from newborn screening to healthcare access. Because legislators are more likely to listen and take action

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June 13 2018
Awareness, Community, Patients

How a Robot Helped a Teen Living with CVID

POSTED BY: kmcmahon

Since being diagnosed with Common Variable Immune Deficiency (CVID) in 2016, Mitch Almason’s young life has been a series of adjustments. His monthly Revolutionary War reenactments have turned to yearly, and he has missed more days of school than he has attended. A once very active child filled with enthusiasm and a passion for swimming, playing

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June 08 2018
Awareness, Community, Volunteer

IDF Volunteer Linda Csiza: Shedding Light on a Rare Disease

POSTED BY: kmcmahon

Because primary immunodeficiency diseases (PI) are so rare, many doctors are unfamiliar with how to diagnose and treat them. This is why a PI diagnosis can take some time. Doctors often try ruling out other problems first, and as such, the average amount of time from the onset of symptoms to diagnosis is between 9 and 15 years, based on survey

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