Program areas at IDF
Idf provided educational programs for patients and families living with primary immunodeficiencies (pi). In 2022, approximately 7,798 individuals attended more than 335 presentations. These included idf forums and education meetings, idf get connected group meetings, teen and young adult activities, the idf pi conference and scid compass summit. More than 103,209 idf educational materials were distributed and 881,747 users accessed the idf website for information and support.
In an effort 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 7 medical conferences, providing information and resources to over 590 medical 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 2022, there were 4 abstracts accepted and featured at national medical conferences and 10 manuscripts published in peer review scientific journals, all using usidnet data. Because medical research is a priority, the idf research grant program funded 4 research grants in 2022 totaling over 140,000.
The primary immunodeficiency community turns to idf for individual assistance to answer insurance questions, locate a specialist in their area, find information about treatment, and learn more about their diagnosis. Idf's patient advocacy specialists fulfilled information requests from more than 1,453 individuals seeking education, information, and assistance regarding over 1,890 topics. Idf works throughout the year at the federal and state level to educate lawmakers and the public about issues that impact the pi community. A strong volunteer grassroots advocacy network works to educate policymakers about issues affecting those with pi. In 2022 idf succeeded in securing a permanent medicare benefit for thousands of pi patients to receive home ivig after ten years of legislative advocacy. At idf advocacy day, 240 individuals met with and sent messages to members of congress to ensure that people with pi are able to live healthy and productive lives with excellent treatment options and access to the most appropriate healthcare available.
Other services to patients and families