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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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August 23 2018
In the News, SCID

Immune Deficiency Foundation (IDF) Awarded $4 Million HRSA Grant For Nationwide Screening and Education Program for Severe Combined Immunodeficiency (SCID)

POSTED BY: rdelaney

Association of Public Health Laboratories (APHL) and RTI International to serve as collaborative partners with IDF to implement new initiative targeting people with SCID in underserved areas. August 23, 2018 (Towson, MD) – The Immune Deficiency Foundation (IDF), the national patient organization for people with primary immunodeficiency diseases (

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