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.
Learn More
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.
Learn More
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.
Learn More
The Celiac Disease Foundation develops and delivers impactful education and support programs that empower individuals with celiac disease and those who care for them. We are committed to providing evidence-based education to a broad range of audiences, including patients, families, and healthcare providers. Our accredited healthcare provider training programs have reached thousands of participants, equipping clinicians with practical skills to support their patients with celiac disease. As a major sponsor of global medical conferences, the Foundation is driving international collaboration and education in celiac disease diagnosis, treatment, and research.
Through our patient-focused education programs, we have supported thousands of families to ensure individuals with celiac disease can thrive in academic and social environments with confidence. Celiac Disease Foundation Team Gluten-Free is a community fundraising program that provides a simple way for our community members to raise awareness and funds for the Foundation’s research, advocacy, and education programs. These efforts reflect our ongoing commitment to equipping patients, families, and professionals with the tools they need to navigate celiac disease with knowledge, resilience, and community.