CELIAC DISEASE FOUNDATION
20350 VENTURA BLVD NO 240, WOODLAND HILLS, CA 913642469 www.celiac.org

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Organizations Filed Purposes: CELIAC DISEASE FOUNDATION DRIVES DIAGNOSIS, TREATMENT, AND A CURE THROUGH RESEARCH, EDUCATION AND ADVOCACY TO IMPROVE THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY CELIAC DISEASE AND NON-CELIAC WHEAT/GLUTEN SENSITIVITY.

THE CELIAC DISEASE FOUNDATION DRIVES DIAGNOSIS, TREATMENT AND A CURE THROUGH RESEARCH, ADVOCACY AND EDUCATION.

RESEARCHTHE CELIAC DISEASE FOUNDATION STRATEGICALLY COLLABORATES WITH RESEARCHERS AND PHYSICIAN-BASED ORGANIZATIONS TO ADVANCE UNDERSTANDING OF AND TREATMENTS FOR CELIAC DISEASE. THE FOUNDATION SUPPORTS AND PUBLICIZES THE RESEARCH ACTIVITIES OF ITS WORLD-RENOWNED MEDICAL ADVISORY BOARD, PARTNERS WITH BIOPHARMACEUTICAL COMPANIES TO DEVELOP THERAPIES, PROMOTES CLINICAL TRIALS, AND SERVES AS A CONDUIT TO THE MEDIA FOR SCIENTIFIC COMMENTARY. SINCE 2018, THE FOUNDATION HAS FUNDED OVER $1,000,000 IN CELIAC DISEASE RESEARCH AND MEDICAL CONFERENCE GRANTS TO ADVANCE UNDERSTANDING OF THE DISEASE AND ITS IMPACT. THROUGH OUR YOUNG INVESTIGATOR RESEARCH GRANT AWARD, WE FUND AT LEADING ACADEMIC MEDICAL RESEARCH CENTERS NATIONWIDE TO ADVANCE KNOWLEDGE OF THE CAUSES, PROGRESSION, AND CONSEQUENCES OF CELIAC DISEASE. WE CONTINUE TO EXPAND OUR PATIENT REGISTRY, ICURECELIAC, THAT PROVIDES RESEARCHERS WORLDWIDE WITH DATA TO ACCELERATE RESEARCH TO BETTER UNDERSTAND, AND ULTIMATELY CURE CELIAC DISEASE. THROUGH ITS IQUALIFYCELIAC PLATFORM, THE ONLY PATIENT-DRIVEN CLINICAL TRIAL SCREENING TOOL FOR CELIAC DISEASE TO ACCELERATE RECRUITMENT OF QUALIFIED VOLUNTEERS INTO CLINICAL TRIALS, STUDIES, AND FOCUS GROUPS, THE FOUNDATION PARTNERS WITH BIOPHARMA AND BIOTECH COMPANIES TO SPEED DEVELOPMENT OF ADJUNCT TREATMENTS AND DIAGNOSTICS. C,. A TWO-TIME PATIENT-CENTERED OUTCOMES INSTITUTE (PCORI) AWARD WINNER, THE FOUNDATION DRIVES PATIENT ENGAGEMENT IN CELIAC DISEASE RESEARCH, WITH CEO MARILYN G. GELLER APPOINTED TO THE NATIONAL PCORI PATIENT ADVISORY ENGAGEMENT PANEL. FROM SPONSORING THE FIRST SEROLOGY WORKSHOP, WHICH LED TO TODAY'S CELIAC DISEASE BLOOD TEST, TO COMPELLING THE NIH TO FUND CELIAC DISEASE RESEARCH, THE FOUNDATION CONTINUES TO PLAY AN INTEGRAL ROLE IN IMPROVING THE LIVES OF THOSE AFFLICTED AND THEIR LOVED ONES.ADVOCACYFOR 30 YEARS, THE CELIAC DISEASE FOUNDATION AND OUR NATIONAL NETWORK OF ACTIVISTS HAVE WORKED DILIGENTLY FOR FEDERAL RECOGNITION OF CELIAC DISEASE AS ONE OF THE WORLD'S MOST PREVALENT, AND LEAST DIAGNOSED, GENETIC AUTOIMMUNE DISEASES. THE CELIAC DISEASE FOUNDATION WAS A FOUNDING MEMBER OF THE AMERICAN CELIAC DISEASE ALLIANCE (ACDA), WHICH ACHIEVED THE 2014 FDA GLUTEN-FREE LABELING RULE, AND IS ACTIVELY INVOLVED WITH THE NATIONAL INSTITUTES OF HEALTH (NIH), NATIONAL DIGESTIVE DISEASES INFORMATION CLEARINGHOUSE (NDDIC), AND THE FOOD & DRUG ADMINISTRATION (FDA) IN THE PROMOTION OF CELIAC DISEASE CONCERNS. WE CONTINUE TO EDUCATE OUR ELECTED OFFICIALS ON THE UNMET NEEDS OF PEOPLE WITH CELIAC DISEASE, AND TO EMPHASIZE THE NEED FOR GLUTEN-FREE LABELING STANDARDS AND FUNDING OF CELIAC DISEASE RESEARCH AND EDUCATION PROGRAMS. IN 2020, THE FOUNDATION, IN PARTNERSHIP WITH EXPERT STAKEHOLDERS, RELEASED THE VOLUNTARY RECOMMENDATIONS FOR MANAGING CELIAC DISEASE IN LEARNING ENVIRONMENTS GUIDE AND TRAINING PROGRAM, TO INFORM SCHOOLS HOW TO SUPPORT SECTION 504 ACCOMMODATIONS FOR CHILDREN WITH CELIAC DISEASE. THROUGH OUR IADVOCATE ONLINE PROGRAM, THE FOUNDATION RECRUITS AND TRAINS A NATIONAL NETWORK OF STATE ADVOCACY AMBASSADORS TO ENGAGE AS CIVIC PARTNERS IN THE RESEARCH PROCESS AND TO SPEAK TO MEMBERS OF CONGRESS ON BEHALF OF THE THREE MILLION AMERICANS SUFFERING FROM CELIAC DISEASE. IN APRIL OF 2019, CEO MARILYN G. GELLER'S TESTIMONY BEFORE THE HOUSE APPROPRIATIONS SUBCOMMITTEE HELPED SECURE FY2020 APPROPRIATIONS REPORT LANGUAGE DIRECTING THE NIH TO DEVOTE SUFFICIENT, FOCUSED RESEARCH TO THE STUDY OF CELIAC DISEASE FOR THE FIRST TIME EVER, AND WE CONTINUE TO COLLABORATE WITH FEDERAL AND STATE POLICYMAKERS TO ADDRESS OUR CURRENT PUBLIC POLICY PRIORITIES. IN ADDITION TO SECURING NIH FUNDING FOR THE STUDY OF CELIAC DISEASE, OUR POLICY PRIORITIES INCLUDE: ESTABLISH A NATIONAL CELIAC DISEASE PATIENT REGISTRY AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), INCREASE ACCESS TO CARE BY PROTECTING CHRONIC DISEASE PATIENTS FROM DISCRIMINATION, EXTEND MEDICARE AND MEDICAID COVERAGE FOR MEDICAL NUTRITION THERAPY TO BENEFICIARIES WITH CELIAC DISEASE, SECURE SUFFICIENT CO-SPONSORS FOR H.R.2074 OR S.3021, THE GLUTEN IN MEDICINE DISCLOSURE ACT TO ASSURE ITS ENACTMENT AND CONTINUED FDA FUNDING FOR ENFORCEMENT OF THE GLUTEN-FREE LABELING RULE. INTERNATIONALLY, THE FOUNDATION IS AN AFFILIATE MEMBER OF THE ASSOCIATION OF EUROPEAN COEALIC SOCIETIES (AOECS), REPRESENTING NORTH AMERICAN INTERESTS THROUGH WORLDWIDE COLLABORATION ON CELIAC DISEASE ADVOCACY INITIATIVES.EDUCATIONTHE CELIAC DISEASE FOUNDATION PROVIDES THE PUBLIC WITH INNOVATIVE TOOLS AND TECHNOLOGIES IN THE PROMOTION OF CELIAC DISEASE EDUCATION AS APPROVED BY OUR INTERNATIONALLY RENOWNED MEDICAL ADVISORY BOARD. THROUGH CELIAC.ORG, THE WORLD'S MOST TRAFFICKED WEBSITE FOR CELIAC DISEASE, WE ASSIST PATIENTS AND FAMILY MEMBERS THROUGH INITIATIVES LIKE THE SYMPTOMS ASSESSMENT TOOL, DESIGNED TO FACILITATE COMMUNICATION BETWEEN PATIENTS AND THEIR HEALTHCARE PRACTITIONERS, EAT! GLUTEN-FREE, A GLUTEN-FREE RECIPE HUB WITH TAILORED MEAL PLANS TO HELP THE NEWLY DIAGNOSED AND THEIR FAMILIES EASE THE TRANSITION TO A GLUTEN-FREE DIET, BACK-TO-SCHOOL 504 AND CELIAC DISEASE MANAGEMENT PLAN FOR SCHOOL GUIDES, AND A NATIONWIDE DIRECTORY OF PRACTITIONERS SPECIALIZING IN CELIAC DISEASE. OUR PEER-TO-PEER FUNDRAISING PROGRAM, TEAM GLUTEN-FREE (TGF), RAISES AWARENESS AND FUNDS FOR CELIAC DISEASE RESEARCH, EDUCATION, AND ADVOCACY INITIATIVES. WITHIN TGF IS OUR STUDENT AMBASSADOR PROGRAM THAT EMPOWERS STUDENTS TO BECOME YOUNG LEADERS IN THE CELIAC COMMUNITY AND EDUCATE THEIR PEERS ABOUT CELIAC DISEASE. OUR EDUCATION AND FUNDRAISING PROGRAMS EMPOWER OUR COMMUNITY TO CREATE POSITIVE CHANGE AT A GRASSROOTS LEVEL, ENSURING FUTURE GENERATIONS ARE MORE AWARE OF THE SERIOUSNESS OF CELIAC DISEASE. THE FOUNDATION HAS A ROBUST, NATIONWIDE REACH THROUGH CELIAC.ORG, SOCIAL MEDIA CHANNELS, THE EAT! GLUTEN-FREE APP, AND OUR MONTHLY E-NEWSLETTER. THE FOUNDATION ALSO PROVIDES ROBUST TOOLS AND PROGRAMMING FOR HEALTHCARE PROFESSIONALS, INCLUDING THE ONLINE NASPGHAN CLINICAL GUIDE FOR PEDIATRIC CELIAC DISEASE AND THE CELIAC DISEASE AND PSYCHOLOGICAL HEALTH TRAINING PROGRAM. THROUGH OUR PARTNERSHIP WITH THE USC KECK SCHOOL OF MEDICINE, THE FOUNDATION SUPPORTS RESIDENT EDUCATION AT THE NATION'S LARGEST INTERNAL MEDICINE TRAINING PROGRAM TO DEVELOP FRONT-LINE PHYSICIANS WHO CAN QUICKLY AND ACCURATELY DIAGNOSE CELIAC DISEASE.

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