The Hyper IgM Foundation and the Wiskott-Aldrich Foundation’s first-ever international X-Linked Carrier Surveys are now available! This survey was developed in collaboration with the Primary Immune Deficiency Treatment Consortium (PIDTC) and the Immune Deficiency Foundation (IDF). We hope you will take a few moments to complete the survey.
"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 upcoming survey aims 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, participating is particularly important for all families affected by Hyper IgM and Wiskott-Aldrich syndromes as the survey results will help increase what is currently known about carriers of X-HIGM and WAS.
If you have any questions about this survey project, please email firstname.lastname@example.org or email@example.com or firstname.lastname@example.org. Thank you for your help on this important project.