Celiac Disease Foundation

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 iRecruitCeliac.org 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.

Since its founding in 1990, the Celiac Disease Foundation has funded and executed international init

Goal One: Achieve rapid diagnosis and treatment of celiac disease by supporting research initiatives, studies and clinical trials, and educational programming and resources for healthcare providers.

Goal Two: Achieve rapid diagnosis and treatment of celiac disease through expanded patient education and support programs and tools.

Goal Three: Advocate to influence private and public sector policies to improve the quality of life for all people affected by celiac disease.

Celiac Disease Foundation staff enrolled in the Michigan State University Extension Certificate of Excellence in Nonprofit Leadership and Management program, an 8 course online program that includes courses in: • Strategic Planning • Resource Development • Board Governance • Marketing • Mission Based Management • Social Entrepreneurship • Volunteer Management • Strategic Alliances Staff are also encouraged to identify and attend training courses and meetings beneficial to growing in their role, and are required to set annual growth and development goals as part of their performance review, including listing what supports are needed to achieve their goals. Examples of this include serving on advisory panels and committees of national coalition groups.

The Celiac Disease Foundation adapted to external changes by shifting to a fully virtual operation, providing support and programming online. Staff developed a COVID resource center at https://celiac.org/coronavirus-information/ with more than 200,000 visitors to date. The Foundation was able to deliver a full-day virtual Patient Education & Advocacy Summit to more than 1,700 registrants with thousands more viewing the recorded presentations at https://celiac.org/what-you-need-to-know-video-series/. In response to the need for virtual advocacy training, the Foundation developed an online State Advocacy Ambassador program at iadvocate.celiac.org, preparing advocates to work with their Congressional representatives’ home offices. The Foundation also developed a video-based training program with companion guide to assist schools in meeting federally mandated accommodations for children with celiac disease, found at school.celiac.org. Patient recruitment services at iqualify.celiac.org were expanded, including implementation of an in-house call center to speed recruitment. The Foundation also presented virtually to Congress and NIH to assure research funding for celiac disease, and patient advocates engaged with the FDA to amplify the patient voice in therapeutics development. In shifting to a fully virtual operation, the Foundation modified its policies and procedures to accommodate remote work. In addition to the development of multiple online programs and trainings, the annual peer-to-peer fundraising event, the CDF Turkey Trot, was shifted to a hybrid event where participants used an app to track their steps which replicated moving from New York to California, unlocking gluten-free coupons along the way. Participants walked or ran with their Covid pods, alone, or with their pets, or counted their steps through yoga, dance, gardening, housecleaning, among other forms of movement. More than 2,000 participants engaged from around the world and most of the 50 states.