CDF 2022 Year in Review
This year has been one of growth and progress for the Celiac Disease Foundation and the patient community we are honored to represent. We are pleased to share this overview of our work in 2022, and we thank our individual donors and corporate partners for their ongoing generosity that makes this work possible.
RESEARCH: Accelerating Diagnosis, Treatments, and a Cure
The Celiac Disease Foundation makes strategic investments in cutting-edge biomedical research and patient engagement to advance the pursuit of treatments and a cure for celiac disease.
14 Trials & Studies Supported (2022)
$1,000,000 Funding of Research & Medical Education Grants (2019 – 2022)
18,000 Total Registrants in iQualify Celiac (2018-2022)
- iQualifyCeliac: Expanded patient recruitment services to include patient advisory board implementation to solicit valuable patient insights, study site identification to accelerate enrollment, and site coordinator contact center module for trial sponsors and site coordinators to seamlessly manage patient referrals.
- Premiered Curing Celiac: A Short Story by filmmaker Hayley Repton as part of a nationwide initiative to encourage patients to join the iCureCeliac® patient registry, resulting in over 1,700 new registrants, with 112,718 views.
- Issued white paper advocating for $12 million in medical research funding from the Department of Defense featuring data on the effects of celiac disease on military readiness, retention, and families.
- Supported researchers presenting data on celiac disease, and the results from two Foundation-supported clinical trials at Digestive Disease Week, the world’s largest gathering of gastrointestinal researchers.
- Continued to fund critical investigation at five of the world’s leading academic research centers to advance understanding of celiac disease, its diagnosis, treatment, and a potential cure.
EDUCATION: Effective Outreach to Patients, Providers, and the Public
The Celiac Disease Foundation’s outreach to patients, health care providers, and the public has improved the diagnostic rate of celiac disease, and our focused investments continue to close the gap and end the needless suffering of millions.
2,700 People Trained through Celiac Disease Management for Learning Environments Training Program (2020-2022)
28 Months Developing Critical Dietary Guideline Updates (2019 – 2022)
37,752 Physicians Educated through NASPGHAN (2017-2022)
5.8M Celiac.org Visitors / 3.4M Social Media Reach / 3,500 Community Fundraising Participants (2022)
- Sponsored Columbia University Celiac Disease Center International Symposium, University of Chicago and Boston Children’s Hospital celiac disease seminars, educating thousands of patients and providers worldwide on the latest in research, diagnosis, and treatment of celiac disease.
- Hosted Ask-the-FDA Educational Webinar with representatives from the U.S. Food and Drug Administration and Association of European Coeliac Societies (AOECS) to educate patients, providers, and the public on gluten-free labeling rules.
Developed and host on celiac.org the NASPGHAN Clinical Guide for Pediatric Celiac Disease web-based tool to assist healthcare professionals in the diagnosis and management of celiac disease patients, improving the quality and effectiveness of care provided.
- Marilyn Geller, CEO, served as celiac disease patient advocate on Expert Panel Workgroup for the Academy of Nutrition and Dietetics, shaping policy for first update in 10 years to guidelines for registered dietitians working with celiac disease patients and caregivers.
- Provided on celiac.org the Celiac Disease Management for Learning Environments Training Program web-based instruction for schools, parents, and caregivers on implementation of standardized accommodations required by the Americans with Disabilities Act, based on what is medically and psychologically necessary for children with celiac disease to succeed at school.
ADVOCACY: Driving Policy Change Today and Tomorrow
The Celiac Disease Foundation is committed to being the worldwide voice of the celiac community before key policy makers in Congress and federal research and regulatory agencies.
363 State Advocacy Ambassadors trained (2020 – 2022)
16,026 Letters/Emails sent to Congress (2020 – 2022)
27 U.S. Representatives in the Celiac Disease Congressional Caucus (2022)
- Secured the first National Institutes of Health Notice of Special Interest (NOSI) for Celiac Disease in November 2021 – a dedicated research grant targeting an area of interest identified by the NIH – resulting from focused, years-long efforts on behalf of the celiac disease patient community.
- Secured, for the first time, celiac disease as a listing in the National Institutes of Health Research, Condition, and Disease Categorization – a database that lists diseases and conditions receiving funding. NIH reports that $9 million was spent on celiac disease research in FY2021.
- Secured FY2022 federal budget report language encouraging NIH to devote focused research to celiac disease and its cause and urging NIAID to support better coordination of existing research and a new focus on diagnosing and effectively treating celiac disease.
- Partnered with the Celiac Disease Congressional Caucus to request the U.S. Centers for Disease Control include celiac disease in its CDC A-Z Index, a CDC.gov website navigation tool containing important public health information.
- Advocated for the bipartisan Medical Nutrition Therapy Act which expands access through Medicare to patients with chronic diseases, including celiac disease.
- Partnered with the Los Angeles County Food Equity Roundtable, a multi-organization campaign focused on solving food insecurity in populations including those with dietary restrictions; this work was represented in September at the White House Conference on Hunger, Nutrition, and Health.
- Submitted comments to inform the U.S. Preventive Services Task Force proposed framework seeking assurance that celiac disease is included in investigation of how food insecurity is assessed by healthcare providers, the impact of interventions on food security, and outcomes for patients.
- Advocated for progress in celiac disease awareness, treatment, and cure through ongoing partnerships with Autoimmune Association, Association of European Coeliac Societies, Crohn’s and Colitis Foundation, Defense Health Research Consortium, Digestive Disease National Coalition, Food Allergy Research and Education, and the National Health Council.