CDF 2023 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 2023, and we thank our individual donors and corporate partners for their ongoing generosity that makes this work possible.
RESEARCH: Driving Innovation and Advancing Treatments
Strategic investments in cutting-edge biomedical research and patient engagement are driving advancement and progress toward treatments and a cure for celiac disease.
- Launched website that brings together solutions to optimize and accelerate enrollment into clinical studies for celiac disease and comorbid conditions. Formalizing the global recruitment process to speed patients into clinical trials to rapidly accelerate treatments and a cure.
Research Grant Awards:
- Continued to fund critical investigation at the world’s leading academic research centers to advance understanding of celiac disease, its diagnosis, treatments, and a potential cure.
Presenting Posters and Abstracts: Co-authored and presented six abstracts at industry gatherings, including Digestive Disease Week, the world’s largest gathering of gastrointestinal researchers; the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN) Annual Meeting; United European Gastroenterology Week; and the Association of European Coeliac Societies (AOECS) General Assembly:
- The Virtual Celiac Symptoms Study: Symptom and Gluten-Free Diet Perceptions at Baseline – co-authored by Marilyn G. Geller in partnership with Takeda
- Diagnosing Celiac Disease in the United States of America, Germany, Italy and Spain: Findings from a Real-World Survey – co-authored by Marilyn G. Geller in partnership with Adelphi Real World
- Physician Management of Celiac Disease: A Comparison of Disease Knowledge, Diagnosis, and Patient Management Between Gastroenterologists and Primary Care Physicians in Germany, Italy, Spain, and the United States – Findings from a Real-World Survey – co-authored by Marilyn G. Geller and Julia McBeth in partnership with Adelphi Real World
- The Virtual Celiac Symptoms Study: Reported Symptoms Over 12 Weeks in Adults – co-authored by Marilyn G. Geller in partnership with Takeda
- The Virtual Celiac Symptoms Study: Reported Symptoms Over 12 Weeks in Adolescents – co-authored by Marilyn G. Geller in partnership with Takeda
- The Virtual Celiac Symptoms Study: Symptom and Gluten-Free Diet Perceptions of Adolescents at Baseline – co-authored by Marilyn G. Geller in partnership with Takeda
ADVOCACY: Driving Policy Change Today and Tomorrow
Committed to being the worldwide voice of the celiac disease patient community before key policy makers in Congress and federal research and regulatory agencies.
- Championed the advocacy effort in Congress to successfully secure first-ever 2023 U.S. Department of Defense funding for celiac disease research.
- Led expert 21-partner coalition recommendations to the U.S. Department of Agriculture to address food equity and insecurity, advocating changes to the WIC Food Package Proposed Rule to meet the needs of celiac disease patients.
- Provided recommendations to the U.S. Food and Drug Administration advocating policy updates to standardize labeling for online grocery shopping so patients can shop with confidence.
- Established the Celiac Disease Foundation Research Working Group, bringing together researchers, experts from academia, and other stakeholders to inform advocacy efforts on current policy topics vital to patient health and well-being.
- Joined Representative Betty McCollum (D-MN) to establish the U.S. Congressional Celiac Disease Caucus to support federal funding for celiac disease research and advance policies to ease the suffering of celiac disease patients.
- Partnered with U.S. Department of Defense to drive global engagement in first-time research funding opportunities for celiac disease researchers and promote patient involvement to support ongoing government funding for treatments and a cure.
- Championed successful creation of the National Institutes of Health Office of Autoimmune Disease Research and serving as a coalition member to assist with office establishment.
- Introduced Policy Advocate training program, educating celiac disease advocates on policy priorities, launched monthly Advocacy Update featuring current celiac disease news, and introduced Patient Profile Series highlighting stories from our community.
EDUCATION: Educating Providers and the Public
Robust outreach to patients and healthcare providers has improved the diagnostic rate of celiac disease; focused investments continue to close the gap and end the needless suffering of millions.
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, with CEO Marilyn G. Geller providing updates on current developments in research and advocacy to these global audiences.
Tools and Programs:
- Celiac.org, the world’s most trafficked website for celiac disease information and support.
- Online Symptoms Assessment Tool web-based tool used by millions to determine if they have an increased risk for celiac disease based on questions about unexplained symptoms or a family member with celiac disease.
- Healthcare Practitioner Directory, a free listing of credentialed physicians, dietitians, mental health professionals, and allied health providers in all 50 states who treat patients with celiac disease. This directory connects with the Symptoms Assessment Tool to provide guidance for patients.
- Eat! Gluten-Free website and app with dietitian-created meal plans and recipes, plus product listings to help visitors discover what’s new locally and globally on the gluten-free market.
- 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.
- 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.
- Celiac Strong Day supports schools nationwide to raise awareness of celiac disease among the next generation in their learning environments – providing students, teachers, parents, and faculty with materials to educate classrooms and communities.
- Certificate of Training in Treating Gluten-Related Disorders developed by the Academy of Nutrition and Dietetics with the support of the Celiac Disease Foundation and reimbursement grants offered to increase the pool of registered dietitians skilled in celiac disease nutritional therapy.