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The Primary Immune Deficiency Treatment Consortium (PIDTC) consists of 47 centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system. XLA Life joins the list of patient advocacy groups (PAGs) and was featured in the PIDTC quarterly newsletter.
[See Attached Newsletter]
Others PAGs established in the PIDTC network include: Jeffrey Modell Foundation, Immune Deficiency Foundation, SCID Angels for Life Foundation, Wiskott-Aldrich Foundation, Hyper IgM Foundation, and CGD Association of America.
The PIDTC has developed a centralized computerized registry with the eventual aim of including all patients diagnosed with inherited immune diseases in North America. The PIDTC currently has four ongoing studies for treatment(s) of Severe Combined Immune Deficiency Disorder, Wiskott-Aldrich Syndrome, and Chronic Granulomatous Disease. These studies will help us learn how to better understand, diagnose, and manage primary immune disorders - the end goal being improved outcomes and quality of life for patients.
XLA Life hopes to jumpstart PIDTC initiatives for XLA, and promote ongoing PIDTC initiatives. Please check out our first feature in the attached PIDTC newsletter.