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July 01, 2022
Education

Continuing education courses offered for physicians

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The following educational opportunities are jointly provided by Postgraduate Institute for Medicine and PlatformQ Health Education, LLC, working in collaboration with the National Organization for Rare Disorders, Inc. (NORD) and the Immune Deficiency Foundation (IDF).

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June 30, 2022
SCID, SCID Compass

Congenital athymia diagnosis begins at newborn screening

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Learn how congenital athymia is diagnosed and treated, and what causes this rare immunodeficiency by tuning into "Congenital Athymia 101," an IDF forum presented by Dr. Elena Hsieh, University of Colorado School of Medicine Associate Professor of Pediatrics, Section of Allergy and Immunology, and Department of Immunology and Microbiology Director

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June 24, 2022
Living with CGD

Study finds CGD carriers exhibit symptoms of disorder

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A chronic granulomatous disease (CGD) carrier study that involved the Chronic Granulomatous Disease Association of America (CGDAA) and the Primary Immune Deficiency Treatment Consortium (PIDTC) shows that female CGD carriers suffer from the same symptoms as those diagnosed with the disorder and recommends that CGD carriers seek diagnosis and

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June 24, 2022
Advocacy

Why laboratory-developed tests’ fate matters for rare disease patients

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Laboratory-developed tests (LDTs) fill an important niche in rare disease testing and newborn screening. Efforts via the VALID Act to put LDTs under FDA regulation could hurt patient access to innovative and specialized medical testing.

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June 23, 2022

Donor Spotlight: London

POSTED BY: rdelaney

At 18 months old, London was diagnosed with Transient Hypogammaglobulinemia of Infancy (THI) and placed on monthly IVIG, but her symptoms didn’t improve. After connecting with the Immune Deficiency Foundation, the family was directed to Dr.

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