The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
The Hyper IgM Foundation and the Wiskott-Aldrich Foundation’s first-ever international X-Linked Carrier Survey was developed in collaboration with the Primary Immune Deficiency Treatment Consortium (PIDTC) and the Immune Deficiency Foundation (IDF).
"A study assessing the physical health and psychosocial well-being of female carriers of Wiskott-Aldrich syndrome (WAS) and X Linked Hyper IgM Syndrome (X-HIGM)"
Developed with immunologists who are experts in primary immunodeficiency diseases, including Wiskott-Aldrich syndrome (WAS) and X Linked Hyper IgM Syndrome (X-HIGM), this survey aimed to learn more about the reported health outcomes of Carriers of WAS and X-HIGM and how this affects individuals’ lives, including diagnosis, along with carries’ overall well-being and quality of life.
Carriers of X-HIGM and WAS are very rare and have never been part of a detailed international exploratory survey before. Therefore, participation was particularly important for all families affected by Hyper IgM and Wiskott-Aldrich syndromes as the survey results helped increase what is currently known about carriers of X-HIGM and WAS.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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