Program areas at IDF
Immune Deficiency Foundation (idf) provided educational programs for patients and families living with primary immunodeficiencies (pi). In 2023, approximately 30,320 individuals were supported and helped by attending or listening to more than 360 presentations at no additional cost to them. These included education sessions, idf get connected group meetings, teen and young adult activities, the idf pi conference, and podcast episodes. More than 822,000 users accessed the idf website for information and support.
To improve the diagnosis, treatment, and care of those affected by pi, idf has several initiatives to provide resources directly to the medical community, including exhibiting at nine medical conferences, providing information and resources to over 3,195 healthcare professionals, and administering a consulting immunologist program that allows physicians to consult with an expert clinical immunologist about patient-specific questions to obtain valuable diagnostic, treatment, and disease management information. Idf conducts national surveys and focus groups of patients, physicians, and other healthcare professionals, building a collection of quantifiable data related to primary immunodeficiencies. In 2023, over 2,000 individuals participated in two idf patient surveys to gather data on the pi experience since no federally funded health surveys in the u.s. Collect information on pi. There were three abstracts and four published manuscripts all using usidnet data. Because medical research is a priority, the idf research grant program funded five research grants in 2023 totaling over 192,000.
The pi community turns to idf for individual assistance including but not limited to answering insurance questions, locating a specialist in their area, finding treatment information, and learning more about their diagnosis. Idf's patient advocacy specialists fulfilled information requests from more than 1,665 individuals seeking education, information, and assistance. Idf works throughout the year at the federal and state levels to educate lawmakers and the public about issues that impact the pi community. A strong volunteer grassroots advocacy network works to inform policymakers about issues affecting those with pi. In 2023, with support from idf, legislation was reintroduced to ban copay accumulators federally by a bill in the u.s. house of representatives. At idf advocacy day, 243 individuals met with and sent messages to members of congress to ensure that people with pi can live healthy and productive lives with excellent treatment options and access to the most appropriate healthcare available.