Causes: Health, Medical Disciplines Research
Mission: The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Programs: Education: idf provided educational programs across the country for patients and families living with pi. In 2017, approximately 17,066 attended more than 230 presentations in 115 cities in 41 states and two countries. These included local education meetings, get connected groups, teen escape weekends and medical exhibits. The idf 2017 national conference drew more than 1,275 attendees. Idf coordinates an outreach program with plasma collection centers throughout the country. Approximately 3,035 people were reached in 81 visits to plasma centers this year. Throughtout the year, over 380,000 idf educational materials were distributed to the pi community.
advocacy: the pi community turns to idf for individualized assistance related to insurance, locating a specialist, treatment information, and more. Idf fulfulled over 8,248 requests from patients and families. Locating a specialist was the number one need with 1,334 requests. In terms of public advocacy, idf works throughout the year to educate patients about issues, both federal and state, that impact the pi community. Idf has a strong volunteer grassroots advocacy network to educate policymakers about issues affecting our community. Over 8,000 letters and calls were sent to policymakers, and our advocacy day on capitol hill gathered more than 75 volunteers who met with members of congress about issues facing the pi community.
research and medical outreach: idf promotes, participates in, and conducts research that has helped characterize pi and given patients and healthcare providers substantially improved treatment options. Idf conducts national surveys and focus group of patients, physicians and other healthcare professionals that help provide quantifiable data which has been extremely valuable. In 2017, more than 5,557 patients and health care professionals participated in five idf surveys. Idf ephr, the online personal health record for patients with pi developed by idf, currently has 3,631 health records. It is an online tool for individuals and families living with pi that help patients take charge of their health and manage their information in one place. Pi connect, the idf patient powered research network which is accessed through idf ephr, grew to 2,209 users. Pi connect users consent into the united states immunodeficiency network (usidnet) patient registry, a program of idf. Usidnet utilizes a network of leading immunologists who have joined together to advance knowledge in the field of pi. A key component is the patient-consented registry, which surpassed the 6,584 registration mark. Idf actively promotes and develops medical education and resources to improve the diagnosis, treatment and care of pi. There were nine idf and usidnet lebien visiting professor programs through which a clinical immunologist leads grand rounds or presents at other educational activities. Idf exhibited at six medical conferences, and 98 physicians took advantage of our consulting immunologist program, where they consult with an expert clinical immunologist about patient specific questions to obtain valuable diagnostic, treatment and disease management information.
other services to patients and families
Mission: The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Programs: Education: idf provided educational programs across the country for patients and families living with pi. In 2017, approximately 17,066 attended more than 230 presentations in 115 cities in 41 states and two countries. These included local education meetings, get connected groups, teen escape weekends and medical exhibits. The idf 2017 national conference drew more than 1,275 attendees. Idf coordinates an outreach program with plasma collection centers throughout the country. Approximately 3,035 people were reached in 81 visits to plasma centers this year. Throughtout the year, over 380,000 idf educational materials were distributed to the pi community.
advocacy: the pi community turns to idf for individualized assistance related to insurance, locating a specialist, treatment information, and more. Idf fulfulled over 8,248 requests from patients and families. Locating a specialist was the number one need with 1,334 requests. In terms of public advocacy, idf works throughout the year to educate patients about issues, both federal and state, that impact the pi community. Idf has a strong volunteer grassroots advocacy network to educate policymakers about issues affecting our community. Over 8,000 letters and calls were sent to policymakers, and our advocacy day on capitol hill gathered more than 75 volunteers who met with members of congress about issues facing the pi community.
research and medical outreach: idf promotes, participates in, and conducts research that has helped characterize pi and given patients and healthcare providers substantially improved treatment options. Idf conducts national surveys and focus group of patients, physicians and other healthcare professionals that help provide quantifiable data which has been extremely valuable. In 2017, more than 5,557 patients and health care professionals participated in five idf surveys. Idf ephr, the online personal health record for patients with pi developed by idf, currently has 3,631 health records. It is an online tool for individuals and families living with pi that help patients take charge of their health and manage their information in one place. Pi connect, the idf patient powered research network which is accessed through idf ephr, grew to 2,209 users. Pi connect users consent into the united states immunodeficiency network (usidnet) patient registry, a program of idf. Usidnet utilizes a network of leading immunologists who have joined together to advance knowledge in the field of pi. A key component is the patient-consented registry, which surpassed the 6,584 registration mark. Idf actively promotes and develops medical education and resources to improve the diagnosis, treatment and care of pi. There were nine idf and usidnet lebien visiting professor programs through which a clinical immunologist leads grand rounds or presents at other educational activities. Idf exhibited at six medical conferences, and 98 physicians took advantage of our consulting immunologist program, where they consult with an expert clinical immunologist about patient specific questions to obtain valuable diagnostic, treatment and disease management information.
other services to patients and families
Health
Towson
