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.

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. Our vision is a highly optimistic but credible shared dream of what is possible: By 2025, all Americans with celiac disease will be diagnosed and treated.

Source: Nonprofit submitted responses

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 Type: Grow, expand, scale or increase access to the existing programs and services.

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

Goal Type: Grow, expand, scale or increase access to the existing programs and services.

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

Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.

Describe an investment in leadership

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.

This organization mobilizes for mission in the following ways:

• Strategic Partnerships

• Networks of Collective Impact Efforts

• Thought Leadership

• Raising Awareness

• Community Building

• Policy Advocacy

What are this organization’s external mobilizaton efforts?

The Celiac Disease Foundation engages in strategic partnerships with patient advocacy groups, medical societies, biopharmaceutical companies, and retail manufacturers. As the North American affiliate to the AOECS, the Foundation promotes global collaboration for drug development and labeling of gluten-free foods and medicines. Through its partnership with NAPSGHAN, the Foundation developed and hosts the online Clinical Guidelines for Pediatric Celiac Disease decision tool, used by thousands of clinicians annually. Other partnerships include serving on the PCORI Patient Engagement Advisory Panel, NHC, NCAPG, and DDNC. The Foundation presents at meetings and publishes peer-reviewed research from its iCureCeliac patient registry. Through its State Advocacy Ambassador, School Guidelines for Celiac Disease Management , Team Gluten-Free, and Student Ambassador and expansive social media programs, the Foundation engages in robust advocacy, community building, training and organizing.

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.