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August 04, 2022
Awareness

Update - Monkeypox may be a threat to immunocompromised on current trajectory

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What is monkeypox and how concerned about the current outbreak should you be if you are immunocompromised? U.S. and international bodies have declared a public health emergency to try to get the situation under control.

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August 02, 2022
Advocacy, Medicare

New diagnostic code for ultrarare primary immunodeficiency promises multiple benefits

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A new ICD-10 code for an ultrarare condition called activated PI3K delta syndrome (APDS; also known as PASLI disease) could mean better data for researchers and easier navigation of the medical system for patients and their caregivers.

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August 01, 2022
SCID Compass

Addressing caregivers’ mental health is key after SCID diagnosis

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Three parents share their experiences in a new video emphasizing the importance of caregivers addressing their mental health after a child is diagnosed with severe combined immunodeficiency (SCID).

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July 28, 2022
Living with CGD

CGDAA empowers, connects CGD community

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The Chronic Granulomatous Disease Association of America (CGDAA) advocates for patients, carriers, and families by providing clear, accurate, and independent news information about CGD and CGD research.

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July 21, 2022

Donor Spotlight: Nupur Murthy

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When IDF community member Nupur Murthy first received a diagnosis of Hemophagocytic

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