Immune Deficiency Foundation

“The governing documents, conflict of interest policy and financial statements are available upon request. In addition, the financial statements are available on the website.”

“The 990 is reviewed by the chief financial officer once completed by the auditors. Once the chief financial officer is satisfied with the accuracy, the 990 is then passed ont to the president & ceo for review. After that level of review is complete, it is then passed on to the finance committee for approval. Once that happens it is reviewed and once accurate, approved by the board of trustees.”

“Each year idf requests that all board of trustee members and staff complete a conflict of interest statement disclosing any potential conflict that may exist. These are kept on file in the idf office. The board liaison/cfo distributes the statement annually for signatures to the board. The board liaison/cfo, would distribute to any staff necessary. The board liaison/cfo would review and would bring it to the president & ceo's attention is there are conflicts. Any restrictions, if necessary, would be made at his level or above, depending on who/what the conflict is.”

“The president & ceo's compensation is reviewed and documented by the personnel committee. The committee reviews websites such as salary.com and/or reviews of materials such as asae's compensation and benefits study book to determine the correct salary for the position. The compensation is presented and approved by the full board. The personnel committee informs the president & ceo, human resources, and accounting. For all employees, an annual review is conducted by the employee's supervisor. Based on this review, it is determined if the person gets an annual increase beyond the cost of living. Review of websites such as salary.com and/or review of materials such as asae's compensation and benefits study book helps determine the correct salary for teh position. If the supervisor approves an increase, paperwork is drawn up and submitted to the president & ceo for approval and is also reviewed by the personnel committee. Once approval is complete, human resources and accounting are informed of the increase. The employee is notified as well.”

“The president & ceo's compensation is reviewed and documented by the personnel committee. The committee reviews websites such as salary.com and/or reviews of materials such as asae's compensation and benefits study book to determine the correct salary for the position. The compensation is presented and approved by the full board. The personnel committee informs the president & ceo, human resources, and accounting. For all employees, an annual review is conducted by the employee's supervisor. Based on this review, it is determined if the person gets an annual increase beyond the cost of living. Review of websites such as salary.com and/or review of materials such as asae's compensation and benefits study book helps determine the correct salary for teh position. If the supervisor approves an increase, paperwork is drawn up and submitted to the president & ceo for approval and is also reviewed by the personnel committee. Once approval is complete, human resources and accounting are informed of the increase. The employee is notified as well.”

“North dakota, new hampshire, new jersey, new york, ohio, pennsylvania, rhode island, tennessee, virginia, washington, wisconsin”

“The governing documents, conflict of interest policy and financial statements are available upon request. In addition, the financial statements are available on the website.”

“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 more than 9,765 requests from individuals and families seeking education, information, and assistance. Idf filled 399 requests to locate a specialist; the most common inquiry from constituents. 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. At idf advocacy day, 199 individuals met with 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.”

“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 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. Because medical research is a priority, the idf research grant program funded 7 research grants in 2020. Idf ephr, an online personal health record for 4,733 individuals with pi is an online tool that helps patients take charge of their health and manage their information in one place. Pi connect, a research network accessed through idf ephr, grew to 2,711 users in 2020. Pi connect users consent into the united states immunodeficiency network (usidnet) patient registry, which utilized a network of leading immunologists who collaborate to advance knowledge in the field of pi. A key component is a patient- consented registry, which has 7,870 registrants. 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 2020, idf launched a covid-19 survey, reaching out to participants monthly to gather data.”

“Other services to patients and families”

“1,411,283 190,195 84,636”

“The finance committee assumes reponsibility for oversight of the audit and selection of an independent accountant. The process has not changed from the prior year.”