Celiac Disease Foundation
Celiac Disease Foundation (CDF) is a 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 and non-celiac wheat sensitivity through funding important advocacy, education, and research initiatives. Today, under the guidance of a National Board of Directors and an internationally 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 and non-celiac wheat sensitivity.
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®, CDF has played a critical role in improving the lives of those afflicted and their loved ones. CDF 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 partnering with the North American Society for the Study of Celiac Disease (NASSCD) to fund the annual Young Investigator Award. CDF’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. CDF offers a nationwide network of local Support Groups, CDF U college chapters, and Student Ambassadors, delivering programs and services to the diagnosed and yet to be diagnosed. Our community fundraising program, CDF Team Gluten-Free, provides a simple way for athletes and non-athletes alike to raise awareness and funds for our programs for advocacy, education, and advancing research. We publish INSIGHT, a quarterly newsmagazine, as well as INBRIEF, a monthly e-newsletter dedicated to providing the latest information regarding research, advocacy, education, and the gluten-free lifestyle.
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. Through celiac.org, CDF offers digital tools for diagnosis and treatment, including: a Symptoms Checklist, Healthcare Practitioner Directory, 7-Day Meal Plan, Recipe Hub, Ask-the-Dietitian program, and the Gluten-Free Allergy-Free Marketplace. Programs for healthcare practitioners include the Celiac Disease and Gluten-Related Conditions Psychological Health Training Program developed in partnership with Children’s National Health System, a video series, research updates, and practice tools. With vital programs and services for the public, patients, healthcare professionals, and the food industry, CDF meets the growing public health challenge of diagnosing and treating celiac disease and non-celiac wheat sensitivity. Since 2012, CDF 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.
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 and non-celiac wheat sensitivity. CDF 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 and non-celiac wheat sensitivity concerns. CDF 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. CDF 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.