Celiac Disease Foundation

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

RESEARCHA TWO-TIME PATIENT-CENTERED OUTCOMES INSTITUTE (PCORI) AWARD WINNER, THE CELIAC DISEASE FOUNDATION ADVANCES CELIAC DISEASE RESEARCH, STRATEGICALLY COLLABORATING WITH RESEARCHERS AND CLINICIANS TO ADVANCE UNDERSTANDING OF AND TREATMENTS FOR CELIAC DISEASE WITH A FOCUS ON IMPROVING PATIENT ENGAGEMENT IN THE RESEARCH PROCESS. SINCE 2018, THE FOUNDATION HAS FUNDED MORE THAN $1,300,000 IN CELIAC DISEASE RESEARCH AND MEDICAL CONFERENCE GRANTS TO ADVANCE UNDERSTANDING OF THE DISEASE AND ITS IMPACT. THE FOUNDATION SUPPORTS AND PUBLICIZES THE RESEARCH ACTIVITIES OF ITS WORLD-RENOWNED MEDICAL ADVISORY BOARD, PARTNERS WITH BIOPHARMACEUTICAL COMPANIES TO ACCELERATE THE DEVELOPMENT OF THERAPIES, PROMOTES CLINICAL TRIALS, AND SERVES AS A CONDUIT TO THE MEDIA AND THE CELIAC PATIENT COMMUNITY FOR SCIENTIFIC COMMENTARY. THROUGH OUR RESEARCH GRANT AWARD PROGRAM, WE FUND RESEARCH AND PROGRAMS AT LEADING ACADEMIC MEDICAL 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. IQUALIFYCELIAC IS THE ONLY PATIENT-DRIVEN CLINICAL TRIAL SCREENING PLATFORM FOR CELIAC DISEASE, ALLOWING PATIENTS TO FIND OUT IF THEY ARE ELIGIBLE TO PARTICIPATE IN A CLINICAL TRIAL OR STUDY. IQUALIFYCELIAC HELPS LOWER THE COST OF DRUG DEVELOPMENT BY PARTNERING WITH THE CELIAC COMMUNITY TO ENSURE THAT QUALIFIED CELIAC DISEASE PATIENTS ENROLL IN AND ARE SATISFIED WITH THEIR PARTICIPATION IN CLINICAL TRIALS AND STUDIES. 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. IN 2021, THANKS IN PART TO THE ADVOCACY EFFORTS OF THE FOUNDATION, NIH ISSUED ITS FIRST-EVER NOTICE OF SPECIAL INTEREST TO FUND CELIAC DISEASE RESEARCH. THIS MOMENTOUS STEP WAS THE RESULT OF A FOCUSED ADVOCACY EFFORT THAT BEGAN IN APRIL OF 2019, WHEN CEO MARILYN G. GELLER TESTIFIED BEFORE THE HOUSE APPROPRIATIONS SUBCOMMITTEE, WHICH, IN TURN, 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. EVERY NIH APPROPRIATIONS BILL SINCE FY2020 HAS INCLUDED LANGUAGE SPECIFIC TO CELIAC DISEASE. THROUGH OUR ONLINE STATE ADVOCACY AMBASSADOR PROGRAM, THE FOUNDATION RECRUITS AND TRAINS A NATIONAL NETWORK OF PATIENT ADVOCATES 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. THE CONGRESSIONAL CELIAC CAUCUS, CHAIRED BY REP. BETTY MCCOLLUM, WAS CREATED AND LAUNCHED IN 2021 THANKS TO THE WORK OF THE FOUNDATION. 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) TO ELEVATE THE VOICE OF THE CELIAC PATIENT COMMUNITY. IN ADDITION TO INCREASING THE LEVEL OF 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. 2435, 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 COELIAC 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, ADVOCACY, AND EDUCATION 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, GLOBAL 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.