CELIAC DISEASE FOUNDATION
Programs
Celiac Disease Research and Advocacy
RESEARCHTHE CELIAC DISEASE FOUNDATION MAKES STRATEGIC INVESTMENTS IN CUTTING-EDGE BIOMEDICAL RESEARCH AND PATIENT ENGAGEMENT AND COLLABORATES WITH RESEARCHERS AND CLINICIANS TO ADVANCE UNDERSTANDING OF AND TREATMENTS FOR CELIAC DISEASE. FROM 2019-2024, THE FOUNDATION HAS FUNDED MORE THAN $1,500,000 IN INTERNATIONAL RESEARCH AWARDS AND MEDICAL CONFERENCE GRANTS TO ADVANCE KNOWLEDGE OF THE CAUSES, PROGRESSION, AND CONSEQUENCES OF CELIAC DISEASE. OUR ANNUAL GLOBAL PRIZES RECOGNIZE EXCEPTIONAL INVESTIGATORS AT ALL STAGES OF THEIR CAREER, FROM A LATER-CAREER PRIZE FOR EXCELLENCE TO YOUNG INVESTIGATOR AND STUDENT RESEARCH AWARDS. THE FOUNDATION RELIES ON KNOWLEDGE AND GUIDANCE FROM OUR INTERNATIONALLY RENOWNED MEDICAL ADVISORY BOARD. THE FOUNDATION ALSO FOCUSES ON IMPROVING PATIENT ENGAGEMENT IN THE RESEARCH PROCESS. WE CONTINUE TO EXPAND OUR PATIENT REGISTRY, ICURECELIAC, THAT PROVIDES RESEARCHERS WORLDWIDE WITH DATA TO ACCELERATE CELIAC DISEASE RESEARCH. THROUGH IQUALIFYCELIAC-THE LARGEST NORTH AMERICAN DATABASE OF HIGHLY MOTIVATED CELIAC DISEASE PATIENTS-AND IRECRUITCELIAC, WE OFFER PATIENT-DRIVEN CLINICAL TRIAL SCREENING PROGRAMS FOR CELIAC DISEASE, LOWERING THE COST OF PATIENT RECRUITMENT AND SPEEDING ELIGIBLE PATIENTS INTO TRIALS AND STUDIES. THE FOUNDATION ALSO PRODUCES ORIGINAL RESEARCH AND SHARES VIA POSTERS AND ABSTRACTS AT GLOBAL CONFERENCES.ADVOCACYFOR 34 YEARS, THE CELIAC DISEASE FOUNDATION AND OUR NATIONAL NETWORK OF ADVOCATES 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, 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 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 ROBUST, NATIONAL POLICY ADVOCATE TRAINING PROGRAM, THE FOUNDATION RECRUITS AND TRAINS A NETWORK OF PATIENT ADVOCATES TO ENGAGE AS CIVIC PARTNERS IN THE RESEARCH PROCESS AND TO SPEAK TO MEMBERS OF CONGRESS ON BEHALF OF THE MORE THAN THREE MILLION AMERICANS SUFFERING FROM CELIAC DISEASE. THE CONGRESSIONAL CELIAC DISEASE CAUCUS, CHAIRED BY REP. BETTY MCCOLLUM, WAS CREATED AND LAUNCHED IN 2021 IN RESPONSE TO THE FOUNDATION'S WORK. 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 IT IS ACTIVELY INVOLVED WITH THE NATIONAL INSTITUTES OF HEALTH (NIH), THE DEPARTMENT OF DEFENSE (DOD), 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 AND ENSURING THIS DISEASE CONTINUES TO BE INCLUDED IN THE DOD CONGRESSIONALY DIRECTED MEDICAL RESEARCH PROGRAMS-PEER REVIEWED MEDICAL RESEARCH PROGRAM, OUR POLICY PRIORITIES INCLUDE: IMPROVING FOOD LABELING REQUIREMENTS TO MAKE IT SAFER AND EASIER FOR PEOPLE WITH CELIAC DISEASE TO PURCHASE FOOD ITEMS THROUGH THE FOOD LABELING MODERNIZATION ACT OF 2023, EXTENDING MEDICARE AND MEDICAID COVERAGE FOR MEDICAL NUTRITION THERAPY TO BENEFICIARIES WITH CELIAC DISEASE THROUGH THE MEDICAL NUTRITION THERAPY ACT OF 2023, PROTECTING CHRONIC DISEASE PATIENTS FROM DISCRIMINATION AND BOLSTERING PATIENT PROTECTIONS, ADVOCATING FOR CONTINUED FDA FUNDING FOR ENFORCEMENT OF THE GLUTEN-FREE LABELING RULE, AND PROTECTING AND STRENGTHENING SNAP AND OTHER ANTI-HUNGER PROGRAMS. 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. ADDITIONALLY, CEO MARILYN G. GELLER WAS SELECTED TO SERVE WITH THE U.S. CODEX OFFICE DELEGATION TO REPRESENT THE NEEDS OF CELIAC DISEASE PATIENTS AT THE 48TH SESSION OF THE CODEX COMMITTEE ON FOOD LABELING IN QUEBEC CITY AND APPOINTED TO THE INTERNATIONAL SOCIETY FOR THE STUDY OF CELIAC DISEASE (ISSCD) GLUTEN CHALLENGES, SAFETY, AND STANDARDS COMMITTEE (GSSC) AS THE PATIENT ADVOCATE. EDUCATIONTHE CELIAC DISEASE FOUNDATION PROVIDES THE PUBLIC WITH INNOVATIVE TOOLS AND EVENTS TO PROMOTE VITAL CELIAC DISEASE EDUCATION. THROUGH CELIAC.ORG, WE ASSIST PATIENTS AND FAMILY MEMBERS THROUGH INITIATIVES LIKE THE SYMPTOMS ASSESSMENT TOOL, DESIGNED TO FACILITATE COMMUNICATION BETWEEN PATIENTS AND THEIR HEALTHCARE PRACTITIONERS; A NATIONWIDE DIRECTORY OF PRACTITIONERS SPECIALIZING IN CELIAC DISEASE; 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; AND THE CELIAC DISEASE MANAGEMENT PLAN FOR SCHOOL TRAINING PROGRAM. THE FOUNDATION OFFERS A SUITE OF VIRTUAL PROGRAMMING AIMED AT VARIOUS AUDIENCES: INNOVATIONS IN CULINARY MEDICINE WEBINARS, TO BRING TOGETHER RESEARCH, EDUCATION, AND CULINARY EDUCATION; CELIAC TEEN TALK, TO ENGAGE PATIENTS AGES 12-17 WITH THEIR PEERS; LIVING WITH CELIAC VIRTUAL MEETUPS, TO HELP NEWLY DIAGNOSED PATIENTS AND CAREGIVERS; AND SCHOOL SUPPORT SESSIONS, THE FIRST EVER NATIONAL CELIAC DISEASE EDUCATION PARTNERSHIP WITH BOSTON CHILDREN'S HOSPITAL, THE UNIVERSITY OF CHICAGO CELIAC DISEASE CENTER, AND THE MAYO CLINIC TO ASSIST PARENTS OF STUDENTS FROM EARLY CHILDHOOD THROUGH COLLEGE WITH NAVIGATING 504 PLANS AND SCHOOL ACCOMMODATIONS. THE FOUNDATION HAS A ROBUST, GLOBAL REACH THROUGH CELIAC.ORG, SOCIAL MEDIA CHANNELS, 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. OUR PEER-TO-PEER FUNDRAISING PROGRAM, TEAM GLUTEN-FREE (TGF), PROVIDES A SIMPLE WAY FOR ATHLETES AND NON-ATHLETES ALIKE TO RAISE AWARENESS AND FUNDS FOR THE FOUNDATION'S PROGRAMS AND EMPOWERS OUR COMMUNITY TO CREATE POSITIVE CHANGE AT A GRASSROOTS LEVEL.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$3.3M
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