2022 Canadian Resource Guides for Individuals and Families Affected by Primary Immunodeficiency

Abstract

A diagnosis of immunodeficiency can be challenging for families as they navigate the emotional impact of this diagnosis, as well the potential financial burden of treatment. As is the case with many rare diseases, there existed a paucity of information for families looking for appropriate resources related to their diagnosis. The Primary Immunodeficiency Social Work Network was established in 2011 by Immunodeficiency Canada to develop a network of social workers across Canada who work with patients diagnosed with primary immunodeficiency. This network has had a focus on support programs, education, and research. Resource guides were created by the network with the goal of providing comprehensive support and information on resources available for families and individuals affected by primary immunodeficiency in each province as well as those available nationally.