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September 20 2018
Community, Patients, Volunteer

IDF Volunteer Kim DiGangi: A Little Help from New Friends can go a Long Way

POSTED BY: kmcmahon

Kim DiGangi experienced infections her entire life. She spent many years on antibiotics but never connected the dots. When Kim was finally told she may have a primary immunodeficiency disease (PI), she was in complete denial. She sought out second, third, and fourth opinions. Finally, she found a doctor that did not feel she had a PI and sided

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September 05 2018
Advocacy, Medicare

Important Notice for Medicare Beneficiaries with PI Receiving SCIG

POSTED BY: rdelaney

Have you been hearing from your specialty pharmacy that they may not be able to cover your subcutaneous immunoglobulin replacement therapy (SCIG) as a Part B Medicare benefit? If you are a Medicare beneficiary on subcutaneous immunoglobulin replacement therapy (SCIG) with a qualified primary immunodeficiency (PI) condition including Common

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August 31 2018
Research

Coming Next Month: IDF 2018 National Ig Treatment Experiences and Preferences Survey

POSTED BY: rdelaney

Your Input Creates a Better Understanding of Immunoglobulin (Ig) Replacement Therapy The IDF 2018 National Ig Treatment Experiences and Preferences Survey will be released in September 2018 and will be mailed to randomly selected households in the IDF community. This survey specifically focuses on individuals’ experience with intravenous

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August 31 2018
Patients

Since You Asked: Question & Answer (August 2018)

POSTED BY: rdelaney

These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe. Question 1: I have CVID and will be going on Medicare next year. What do I need to know about Medicare coverage, and how is my immunoglobulin (Ig) replacement therapy going to be covered? Question 2: My son has a

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August 24 2018
Awareness, Community, Patients, PI

Made Visible: My Story of Living with a Primary Immunodeficiency

POSTED BY: rdelaney

I spent the first 27 years of my life hiding my invisible illness. I was diagnosed with Hyper IgE/Job Syndrome when I was ten years old. That diagnosis wasn’t easy to come by; my mom had taken me to see countless doctors, specialists, and healers. When an immunologist finally gave us a diagnosis, we learned the name of the disease but not much

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