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SCID News

June 03, 2022
SCID, SCID Compass

Registration open for the SCID Compass Summit

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  Looking for the latest information pertaining to severe combined immunodeficiency (SCID)? Then register for the upcoming fourth annual SCID Compass Summit. Set for June 23-24, from 11 a.m. to 3 p.m. each day, this two-day virtual event is free and offers an opportunity for connection, learning, and sharing of ideas about SCID. The Immune

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May 13, 2022
SCID, SCID Compass

SCID advocate devotes herself to helping parents navigate medical world

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When Barb Ballard gave birth to her son Ray in 1994, doctors provided him with newborn screening. The screening revealed nothing unusual, and, at the time, Ballard considered the screening “a blessing of good genetic health.” Ten months later, Ray lay in the pediatric intensive care unit on a ventilator struggling with pneumocystis (PCP)

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May 09, 2022
SCID, SCID Compass

SCID survey seeks feedback on long-term care needs

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If you’re an adult diagnosed with severe combined immunodeficiency (SCID), or a parent or caregiver of a child with SCID, researchers at the University of California San Francisco (UCSF) want your input for the development of a long-term follow-up program designed to aid individuals and families coping with a SCID diagnosis. The UCSF Needs

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May 05, 2022
SCID, SCID Compass

SCID carrier discussion explores family planning, mental health

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  A few months after Audrey Duggan’s infant son Dean recovered from a bone marrow transplant (BMT) for severe combined immunodeficiency (SCID), she contemplated how to continue building her family. A carrier of X-linked SCID, Duggan knew she didn’t want to pass the SCID gene variant to another son or daughter through natural conception, so

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April 28, 2022
SCID, SCID Compass

Families Help Shape SCID Compass Family Planning Guide

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On the front page of the SCID Compass Family Planning Guide, there is a quote by a mother of five children, including one child diagnosed with severe combined immunodeficiency (SCID). It reads, “Don’t let other people who don’t know what’s going on in your life and in your medical lives, hinder your thought process on whether or not to have

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