IMMUNE DEFICIENCY FOUNDATION
110 WEST ROAD NO 300, TOWSON, MD 21204 www.primaryimmune.org

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Organizations Filed Purposes: THE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCY THROUGH FOSTERING A COMMUNITY EMPOWERED BY ADVOCACY, EDUCATION, AND RESEARCH.

U.S. ORGANIZATION DEDICATED TO IMPROVING LIVES OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCIES

IDF PROVIDED EDUCATIONAL PROGRAMS FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2019, APPROXIMATELY 20,956 INDIVIDUALS ATTENDED MORE THAN 230 PRESENTATIONS IN 112 CITIES IN 36 STATES AND 2 COUNTRIES. THESE INCLUDED IDF EDUCATION MEETINGS, IDF GET CONNECTED GROUP MEETINGS, IDF RETREATS, THE IDF NATIONAL CONFERENCE, TEEN ESCAPE WEEKENDS, AND MEDICAL EXHIBITS. IN ADDITION, IDF COORDINATES AN OUTREACH PROGRAM WITH PLASMA COLLECTION CENTERS THROUGHOUT THE UNITED STATES. APPROXIMATELY 186 PLASMA COORDINATORS CREATED AWARENESS AND DISTRIBUTED THOUSANDS OF EDUCATIONAL MATERIALS DURING VISITS TO PLASMA CENTERS THROUGHOUT THE U.S. MORE THAN 298,337 IDF EDUCATIONAL MATERIALS WERE DISTRIBUTED.

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 10,142 REQUESTS FROM INDIVIDUALS AND FAMILIES SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF FILLED 460 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, 161 INDIVIDUALS GATHERED ON CAPITOL HILL AND 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 11 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. IN 2019, 91 PHYSICIANS PARTICIPATED. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED 4 RESEARCH GRANTS IN 2019.IDF EPHR, AN ONLINE PERSONAL HEALTH RECORD FOR 4,420 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 2,679 USERS IN 2019. 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 7,487 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.

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