Mission & Purpose
Celiac disease is the one of the world’s most prevalent genetic autoimmune diseases, affecting an estimated 3 million Americans, 70-80% of whom are undiagnosed. Causing the body to attack its own small intestine, it can lead to many other devastating health conditions, including cancer. Unfortunately for the millions who suffer, celiac disease has largely been ignored by our federal government which provides little to no funding for research nor for public awareness of its serious consequences. Through strategic investments in research, education, and advocacy, the Celiac Disease Foundation seeks to remedy this by accelerating treatments and a cure.
Since its founding in 1990, the Celiac Disease Foundation has funded and executed international initiatives in three principal areas to bring an end to the suffering caused by celiac disease: medical research, patient and healthcare provider education, and public policy advocacy.
Research Initiatives
- Collaborate with physicians, dietitians, mental health professionals, researchers, and industry, as well as retail manufacturers, medical societies, associations, and colleges, to expand research output and to better understand, and ultimately cure, celiac disease.
- Fund researchers at academic medical research centers nationwide to advance knowledge of the causes, progression, and consequences of celiac disease through our Young Investigator Research Grant Awards.
- Market and maintain iCureCeliac®, the largest and ever-growing celiac disease patient registry, supporting the search for outcome-driven treatments and a cure by facilitating patient-centered research.
- Recruit patients through iQualifyCeliac to participate in clinical trials, studies, and focus groups to accelerate the development of celiac disease therapeutic treatments and better diagnostic tools.
- Drive participation in clinical trials to further the development of drugs and treatments through the Clinical Trial Finder.
Education Initiatives
- Develop and distribute innovative digital tools to healthcare professionals, patients, and family members through initiatives such as the NASPGHAN Clinical Guide for Pediatric Celiac Disease, the Symptoms Assessment Tool, and the Eat! Gluten-Free iOS and Android.
- Expand, create, and fund educational programming and resources for healthcare providers through partnerships including the USC Keck School of Medicine Celiac Disease Training Program, Children’s National Celiac Disease & Psychological Health Training Program, and the Anthem of California Clinical Practice Guidelines for Celiac Disease.
- Collaborate with international partners and government agencies to translate research findings into accessible and usable information for healthcare professionals, celiac disease patients, and their caregivers.
- Host the annual National Conference & Gluten-Free EXPO, where more than 3,500 attendees can receive the latest information on celiac disease, the gluten-free diet, and therapies in the pipeline, as well as sample the latest gluten-free products from over 100 companies.
Advocacy Initiatives
- Recruit and train an international network of Celiac Disease Patient Advocates to engage as active partners in the research process and to speak on behalf of the three million Americans suffering from celiac disease to the researcher and public policy communities.
- Educate policymakers about the critical unmet needs of people with celiac disease.
- Collaborate with federal and state policymakers to establish and expand programs for people with celiac disease.
- Broaden and strengthen the outreach of the Foundation’s grassroots advocacy network to secure urgently needed funding for outcomes-driven research and education programs.
We are here to serve you
The Celiac Disease Foundation is the international 501(c)(3) non-profit organization established in 1990 by Elaine Monarch to improve the quality of life for all people affected by celiac disease through funding important research, education, and advocacy initiatives. Today, under the guidance of a National Board of Directors and a nationally renowned Medical Advisory Board, the Foundation leads the fight to increase the rate of diagnosis, to improve treatments, and to find a cure for celiac disease.
We have made tremendous strides
From sponsoring the first serology workshop, which led to today’s celiac disease blood test, to serving on the planning committee for the landmark 2004 NIH Consensus Development Conference on Celiac Disease, advocating on Capitol Hill for gluten-free labeling laws, disability benefits and therapeutic alternatives to the gluten-free diet, partnering with mainstream manufacturers in creating today’s gluten-free marketplace, and offering the nation’s only celiac disease patient registry, iCureCeliac®, the Foundation has played a critical role in improving the lives of those afflicted and their loved ones.
The Celiac Disease Foundation works closely with researchers to accelerate treatments and a cure, providing data through iCureCeliac®, recruiting for clinical trials and research studies, training Patient Advocates, and funding research grants through the Young Investigator Award. The Foundation’s annual National Conference and Gluten-Free EXPO is the largest national patient conference for celiac disease, with presentations and panel discussions with the world’s foremost celiac disease experts.
The Celiac Disease Foundation offers a nationwide network of Patient Advocates and Student Ambassadors, and our community fundraising program, Team Gluten-Free, provides a simple way for athletes and non-athletes alike to raise awareness and funds for our programs for research, education, and advocacy. We publish a monthly e-newsletter dedicated to providing the latest information regarding research, education, advocacy, and the gluten-free lifestyle.
We work tirelessly to increase diagnosis
Affecting 1% of the population, celiac disease is one of the world’s most prevalent genetic autoimmune conditions. In the United States, celiac disease is also one of the least diagnosed (only 20%), with an estimated 2.5 million children and adults continuing to suffer needlessly. Long-term health complications of undiagnosed celiac disease include: cancers, coronary heart disease, osteoporosis, neurological deficits, anemia, and generalized poor quality of life.
With vital international programs and services for the public, patients, healthcare professionals, and the food industry, the Celiac Disease Foundation meets the growing public health challenge of diagnosing and treating celiac disease. Since 2012, the Foundation has helped to drive the diagnosis rate from one in six to one in five. We intend to drive this to one in four, and so on, until we assure that 100% of our celiac disease population is diagnosed.
We maintain strong relationships and connections
The Celiac Disease Foundation collaborates with physicians, dietitians, mental health professionals and researchers across the country to capitalize research output and further our mission to help improve the quality of life for all those affected by celiac disease.
The 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), NIH Celiac Disease Awareness Program, National Digestive Diseases Information Clearinghouse (NDDIC), and the Food & Drug Administration (FDA) in the promotion of celiac disease concerns.
The Celiac Disease Foundation is a recognized member of Independent Charities of America (ICA), a nonprofit association of America’s best charities, and Health & Medical Research Charities of America (HMR), a nonprofit organization that pre-screens high quality national and international charities. The Foundation has received the GuideStar Exchange Platinum participation level, a leading symbol of transparency and accountability provided by GuideStar USA, Inc., the premier source of nonprofit information.
