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SCID News

July 16, 2021
Awareness, Community, Education, Family, SCID, SCID Compass

Video Encourages Follow-up For SCID

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Even after a child is treated for severe combined immunodeficiency and has a functioning immune system, ensuring good health for the child during school-age years requires diligence. Parents must maintain connections with the medical team and build relationships with school staff. In a 2-minute animated video, entitled “Planning for the Future

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July 14, 2021
Awareness, Community, Education, Family, In the News, SCID, SCID Compass

USA Today Spotlights Family Affected By SCID

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A recent article in USA Today’s Infectious Disease issue describes how a family is coping with SCID during the pandemic. The story focuses on Ryan Dennis, diagnosed with SCID as an infant and kept in isolation at home for several months while doctors searched for a bone marrow transplant donor. At seven months old, Ryan underwent treatment. After

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July 08, 2021
SCID Compass

Expectations & Experiences: Parent & Patient Perspectives

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Recently published in the August 2021 Issue of Clinical Immunology is an article entitled "Expectations and experience: Parent and patient perspectives regarding treatment for Severe Combined Immunodeficiency (SCID)", co-authored by Heather Smith, Christopher Scalchunes, Morton J.Cowan, JenniferPuck, and JenniferHeimall. The survey was designed

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June 25, 2021
SCID, SCID Compass

Support Your Infant in the Hospital

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Hospitalization is an inevitability for babies born with severe combined immunodeficiency, or SCID. It’s imperative that they get treatment to restore their immune system as soon as possible, and that treatment always takes place in the hospital setting. Stays can last for months. So, how can a parent or caregiver lessen the impact of such a

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June 15, 2021
SCID, SCID Compass

Update on Gene Therapy for ADA-SCID

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A group of parents whose infants and toddlers are diagnosed with ADA-SCID banded together and aided in changing the course of gene therapy treatment for their children.   With support from SCID Angels for Life, the parents urged Orchard Therapeutics, the company supervising the ADA-SCID gene therapy treatment clinical trials, to turn the

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