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SCID News

September 20, 2023
Advocacy, Community, SCID, SCID Compass

Carol Ann Demaret advocated for SCID—and IDF

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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

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July 13, 2023
SCID, SCID Compass

Study shows newborn screening improved SCID survival rates

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When 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

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June 29, 2023
SCID, SCID Compass

Teach teens with PI how to transition their healthcare

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Children 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-

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May 05, 2023
SCID, SCID Compass

Paper explores implementation of newborn screening for SCID and other conditions

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The 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

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April 21, 2023
SCID, SCID Compass

Monitoring chimerism after BMT is critical to good health

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SCID 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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