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.