Carol Ann Demaret holds her son, David Vetter, who was diagnosed with severe combined immunodeficiency (SCID) as an infant in 1971 and lived in a germ-free environment. The first time the Immune Deficiency Foundation (IDF) asked Carol Ann Demaret to join the board of the nonprofit founded to help people with primary immunodeficiency (PI), she
Read MoreWhen federal health officials added severe combined immunodeficiency (SCID) to the Recommended Uniform Screening Panel (RUSP), a national guideline for newborn screening (NBS), in 2010, it remained unclear to what degree NBS would improve outcomes for babies diagnosed with SCID. Thirteen years later, a paper by the Primary Immune Deficiency
Read MoreChildren with primary immunodeficiency (PI) often require a high level of medical care, and parents dedicate themselves to managing their children’s health needs. Eventually, though, children grow into adults and must coordinate their own care. How can parents help prepare them for the challenges of staying healthy while navigating a sometimes-
Read MoreThe U.S. Department of Health and Human Services (HHS) added severe combined immunodeficiency (SCID), a PI that is typically fatal unless treated in infancy, to the Recommended Uniform Screening Panel (RUSP) in 2010, but it took eight years before all states implemented newborn screening (NBS) for the condition. What accounted for the seemingly
Read MoreSCID Compass recently convened a panel of experts to discuss chimerism—an often daunting and confusing term—and how it plays a role in the recovery of babies with severe combined immunodeficiency (SCID) who receive bone marrow transplants (BMT). “What is chimerism?,” moderated by Dr. Ami Shah from the Stanford University School of Medicine,
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This resource, a program of the Immune Deficiency Foundation, was developed by funding from the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number SC1MC31881 for $6,000,000.
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