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October 22, 2020
SCID Compass

Video Explores Transition Home After SCID Treatment

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When a family leaves the hospital after their baby receives treatment for severe combined immunodeficiency (SCID), it can be an apprehensive, yet hopeful time in their lives. Parents worry about caring for their baby away from the hospital setting, but also feel relieved and excited to finally be bringing their baby home. Though treatment for

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October 21, 2020
Education

Tips For Staying Healthy

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Taking care of yourself doesn’t have to be complicated. Eat well. Get enough sleep. Exercise. And find a doctor you can depend on. Dr. Victoria Dimitriades offered these words of advice plus other simple, yet insightful tips on how to stay healthy during her presentation, “General Care for Individuals with PI,” an IDF Forum held on September 17

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October 13, 2020
Education

Drug Allergies and PI

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If you’re unsure as to whether or not you’re allergic to penicillin, visit an allergist to find out. Why is this particularly important for those with PI? Because being allergic to penicillin reduces the types of antibiotics that can be administered to treat your infections. Doctors may have to resort to using stronger antibiotics, leading to

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October 12, 2020
Medicare

An Update on the Medicare IVIG Demonstration and the Legislation Attempting to Extend It

POSTED BY: AFreestone

As we have shared, the Medicare IVIG Access Demonstration (demo) allowing Medicare beneficiaries with primary immunodeficiency (PI) to receive intravenous immunoglobulin replacement therapy (IVIG) in the home will end on Dec. 31, 2020 unless it is renewed by act of Congress. In 2017, IDF was successful in ensuring congressional renewal of the

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October 09, 2020
SCID Compass

Video Explains SCID Diagnosis

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Those parents feeling overwhelmed after learning their baby has severe combined immunodeficiency (SCID), a life-threatening PI in which a baby is born without a functioning immune system, may find some comfort and clarity by watching a simple but informative video describing the process of SCID diagnosis. Posted on the SCID Compass website, the

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