Mission & Purpose
Celiac disease is 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.
The Celiac Disease Foundation, established in 1990, is a leading global patient advocacy organization committed to accelerating diagnosis, treatments, and a cure for celiac disease. Our mission is to improve the health and well-being of the millions of individuals around the world affected by this genetic autoimmune disease through our strategic investments in research, advocacy, and education. Our iCureCeliac® patient registry and extensive patient recruitment services enable us to identify qualified patient candidates and speed their enrollment to advance critical disease research. Our unparalleled advocacy program has led the way to secure federal recognition and first-ever research funding from agencies including the U.S. National Institutes of Health and the Department of Defense. We adhere to the highest scientific and ethical standards as we work each day to promote understanding of celiac disease, empower our patient and provider community, and collaborate with partners and stakeholders to carry our mission forward.
Research Initiatives
We work tirelessly year after year to achieve our purpose: advancing research to help cure celiac disease.
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On behalf of our patient community, the Celiac Disease Foundation collaborates 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. Our Research Grant Awards funds researchers at academic medical research centers nationwide to advance knowledge of the causes, progression, and consequences of celiac disease. Through iCureCeliac®, the largest and ever-growing national celiac disease patient registry, we collaborate with researchers and clinicians to search for outcome-driven treatments and a cure. And our study screening platform, iQualifyCeliac, allows patients to find out if they are eligible to participate in a clinical trial or study in their area.
Advocacy Initiatives
We are determined to elevate the celiac patient voice so that celiac disease receives the attention from the federal government that it has long deserved.
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As the advocacy leader in celiac disease, the Celiac Disease Foundation works to marshal the expertise and experiences of the community to develop federal policy to accelerate research for treatments and a cure, as well as to advance other priorities to improve the quality of life for all those affected by celiac disease. The most powerful tools we have for influencing Congress and creating change are the voices of our nationwide network of celiac disease Patient Advocates.
In 2019, the Foundation retained Baker Donelson as our advocacy counsel in Washington, D.C. The relationship has yielded remarkable results in a short period of time, including the first-ever Notice of Special Interest (NOSI) for celiac disease from NIH in 2021.
The Foundation also worked with Congresswoman Betty McCollum (DFL-Minn.) to launch the Congressional Celiac Disease Caucus in 2021 to support innovative celiac disease research and advance legislation that promises to amplify the voice of the celiac patient community. The Celiac Disease Caucus, one of the highest priorities of the Foundation’s advocacy efforts, has grown to 27 members.
Education Initiatives
We invest in programs developed by leading academic research centers in celiac disease to educate healthcare professionals, researchers, and the patient community.
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The Celiac Disease Foundation continues to 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 app.
We fund educational programming and resources for healthcare providers through partnerships including the Children’s National Celiac Disease & Psychological Health Training Program, the Boston Children’s Hospital Monthly Case Conference, and the Columbia University Celiac Connect Continuing Medical Education series. The Foundation is also proud to support education symposiums for healthcare providers and patients at Columbia University and University of Chicago, which bring together the leading celiac disease researchers and clinicians from around the world.
Celiac Disease Foundation Team Gluten-Free is a community fundraising program that provides a simple way for athletes and non-athletes alike to raise awareness and funds for the Foundation’s programs for research, advocacy, and education. Fundraising efforts may include any event from marathons to triathlons, bake sales, movie nights, wedding favors, community service, projects, or any way that you can have fun raising funds.
The Celiac Disease Foundation is proud to support students in our celiac community through our nationwide Student Ambassador Program that empowers children, teens, and young adults to become role models for others with celiac disease while raising awareness in the community and educating their peers.
