Immune Deficiency Foundation

“The 990 is reviewed by the chief financial officer once completed by the outside cpa firm. Once the chief financial officer is satisfied with the accuracy, the 990 is then passed on 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/hr distributes the statement annually for signatures to the board. The board liaison/hr, would distribute to any staff necessary. The board liaison/hr 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 executive 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 executive committee informs the president & ceo, human resources, and accounting.”

“For all key 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 the position. If the supervisor approves an increase, paperwork is drawn up and submitted to the president & ceo for approval. Once approval is complete, human resources and accounting are informed of the increase. The employee is notified as well.”

“Kentucky, maine, maryland, massachusetts, michigan, minnesota, mississippi, nevada, new hampshire, new jersey, new mexico, new york, north carolina, north dakota, ohio, oklahoma, oregon, pennsylvania, rhode island, south carolina, tennessee, virginia, washington, west virginia, 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 immune deficiency foundation (idf) improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency through fostering a community empowered by advocacy, education, and research. Idf seeks to ensure that everyone in the u.s. Affected by pi has a fully informed understanding of the pi diagnosis that affects them, all available treatment options, the expected standard of care, and all of their opportunities for connection and support within the pi community.”

“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.”

“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.”