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

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 with him. Several years later, the complications continued, and she resigned herself to her diagnosis of Common Variable Immune Deficiency (CVID).

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

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 immunoglobulin replacement therapy (IVIG), subcutaneous immunoglobulin replacement therapy (SCIG), and intramuscular immunoglobulin (IM) replacement therapy.

Made Visible: My Story of Living with a Primary Immunodeficiency

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 else. This immune deficiency is incredibly rare, and nobody knew what to do with me.

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

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.

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

August 23, 2018 (Towson, MD) – The Immune Deficiency Foundation (IDF), the national patient organization for people with primary immunodeficiency diseases (PI), recently announced they will be awarded a $4 million grant from the U.S. Health Resources and Services Administration (HRSA) to design and implement an advanced screening and education program for people with Severe Combined Immunodeficiency (SCID) in rural areas or underserved communities. The project period is 08/01/2018 - 07/31/2020.

IDF Volunteer Meghean Feidelman: Making a Difference, One Person at a Time

One of Meghean Feidelman’s first memories is a chest x-ray at three-years-old. This was the beginning of a 40-year arduous journey before the unusual cause of her symptoms would be discovered. Along the way, doctors treated her for a variety of symptoms, but none identified the underlying cause. Everything changed when she finally saw a new doctor who had just finished medical school.

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