Immune Deficiency Foundation

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.

IDF PROVIDED EDUCATIONAL PROGRAMS FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2021, APPROXIMATELY 7,825 INDIVIDUALS ATTENDED MORE THAN 379 PRESENTATIONS. THESE INCLUDED IDF FORUMS, IDF GET CONNECTED GROUP MEETINGS, TEEN WEEK ACTIVITIES, THE IDF NATIONAL SUMMIT, RARE OF THE RARE, AND MEDICAL EXHIBITS. MORE THAN 119,650 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 INFORMATION REQUESTS FROM MORE THAN 3,260 INDIVIDUALS AND FAMILIES SEEKING EDUCATION, INFORMATION, AND ASSISTANCE REGARDING OVER 5,650 TOPICS/SUBJECTS. 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, 385 INDIVIDUALS MET WITH AND SENT MESSAGES TO 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 2 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. 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 7,885 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 2021, THERE WERE 7 ABSTRACTS ACCEPTED AND FEATURED AT NATIONAL MEDICAL CONFERENCES AND 6 MANUSCRIPTS PUBLISHED IN PEER REVIEW SCIENTIFIC JOURNALS, ALL USING USIDNET DATA.

OTHER SERVICES TO PATIENTS AND FAMILIES