Immune Deficiency Foundation

“The organization's bylaws were updated in 2024 for the following: 1) added responsibilities for each trustee to ensure adherance to board governance principles and avoiding conflicts of interest. 2) clarified that persons who have a business relationship with or financial interest in members of industry are not eligible to be trustees”

“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 a digital file. 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 executive committee and board of trustees if there are conflicts. Any restrictions, if necessary, would be made at the board of trustee or president/ceo level, 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, or the national health councils compensation study 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 (if any adjustment for col is given). Review of websites such as salary.com and/or review of materials such as asae's compensation and benefits study book or the national health councils compensation study 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 improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency. We foster a community that is connected, engaged, and empowered through advocacy, education, and research.”

“Immune deficiency foundation (idf) provided educational programs and services for patients and families living with primary immunodeficiencies (pi). In 2024, approximately 30,700 individuals were provided with education and support through publications, webinars, videos and podcast episodes, idf get connected group meetings, teen and young adult activities and the idf pi conference. There were 997 attendees at the pi conference (the first in-person pi conference since 2019), where idf debuted our documentary, "compromised: life without immunity". Idf provided more than 265 hotel room and flight scholarships for pi conference attendees. More than 1.3 million idf website sessions were accessed for information, events, podcasts and support and more than 625 immune system self- assessments were submitted via the website.”

“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 provided answers to over 1,900 questions on 300 different topics from individuals seeking education, information, and assistance. Idf also works at the federal and state levels to educate lawmakers and the public about issues that impact those who are immunocompromised. A strong volunteer grassroots advocacy network, including health access advocate volunteers, inform policymakers about issues affecting those with pi. In 2024, 850 individuals met with and sent more than 2,700 letters and messages to legislators and executive officials 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 quality of life of those affected by pi, idf has several initiatives to provide resources directly to the medical community, including exhibiting at ten medical conferences in 2024, providing information and resources to healthcare professionals, and administering a consulting immunologist program that allows clinicians 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 immunodeficiency. In 2024, over 1,000 individuals participated in an idf patient survey to gather data on ig treatment. There were four publications in 2024 using usidnet data. Because medical research is a priority, the idf research grant program funded four research grants for pi related research in 2024, totaling over 159,000.”