Celiac Disease Foundation

What it reported doing in 2025

Researchthe celiac disease foundation makes strategic investments in cutting-edge biomedical research and collaborates with researchers and clinicians to advance understanding of and treatments for celiac disease. In 2025, the foundation awarded nearly $500,000 in breakthrough grants focused on immune response to gluten and disease onset, funding projects at boston children's hospital, uc davis, Colorado children's hospital, children's national hospital, and beth israel deaconess medical center. The foundation sponsored major scientific gatherings including the tampere celiac disease symposium, the columbia university celiac disease on the horizon conference, the naspghan single topic symposium, and the Colorado screening symposium. In a landmark partnership, the north american society for the study of celiac disease (sscd) became the foundation's scientific advisory committee. The foundation's clinical trial recruitment platform, iqualifyceliac, surpassed 34,000 participating patients, while irecruitceliac supported 9 active trials across 9 new global partner organizations on 3 continents. The foundation also launched the first-ever celiac disease clinical trial site advisory council and the celiac disease foundation impact fund, a venture philanthropy vehicle to fast-track breakthrough therapies and diagnostics from lab to patient.________________________________________advocacyin 2025, the celiac disease foundation affirmed its role as the leading voice for celiac disease policy. The nih allocated $10 million for celiac disease research in fy2025, and celiac disease was included for the third consecutive year in the department of defense peer reviewed medical research program, with $1.58 million awarded. Advocates from 14 states attended the 2025 advocacy summit and hill day, meeting with 30 bipartisan congressional offices and sending more than 5,000 advocacy emails. Advocates from all 50 states submitted celiac disease awareness month proclamation requests, securing a record 27 states and Washington, d.c. Ceo marilyn g. Geller represented celiac patients at the 48th session of the codex committee on food labelling in quebec city, securing amended labeling text, inclusion of celiac disease in mandatory prepackaged food labeling and precautionary allergen labeling guidelines, and a call for experts to inform setting a gluten threshold. The foundation also convened the global celiac advocacy alliance, uniting patient advocacy leaders from 12 organizations across 6 continents.________________________________________educationthe celiac disease foundation provides innovative tools and programming to promote celiac disease education for patients, families, and healthcare professionals. Through celiac.org, the foundation offers a symptoms assessment tool, a nationwide practitioner directory, eat! Gluten-free meal plans, and the celiac disease management plan for school training program. Virtual programming - including culinary medicine webinars now available with live spanish and portuguese translation - reached over 1,000 patients and 200 healthcare professionals in 2025. The foundation convened the college consensus summit to develop the first-ever national recommendations for supporting college students with celiac disease, and launched the celiac disease foundation dietitian advisory council. Tools for healthcare professionals include the naspghan clinical guide for pediatric celiac disease, the celiac disease and psychological health training program, and accredited cme/ceu programs. The foundation reaches a global audience through celiac.org, social media channels with over 250,000 followers and 25 million views, and an e-newsletter with more than 100,000 subscribers.

Financial Efficiency

• Mission deployment rate: 61.1%; rating input score 61
• Program expense ratio: 69.6%; rating input score 70
• Fundraising efficiency: $4.28 raised per $1 spent on fundraising; rating input score 12; 12th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.4%; rating input score 94; 25th percentile among comparable filings
• Pay-setting controls: 5 of 6 controls in place; rating input score 83
  • Compensation committee: Pass
  • Independent consultant: Missing
  • Other Form 990s reviewed: Pass
  • Written employment contract: Pass
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: Limited
• Grant itemization coverage: 100%; rating input score 100; 75th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 13.8%; rating input score 64; 64th percentile among comparable filings
• Total-asset coverage ratio: 1.81; rating input score 54; 54th percentile among comparable filings
• Liabilities to assets ratio: 0.18; rating input score 37; 37th percentile among comparable filings
• Officer compensation ratio: 19.5%; rating input score 16; 16th percentile among comparable filings

Growth

• Program expense growth: 14.6% per year; rating input score 100; 74th percentile among comparable filings
• Revenue growth: 14% per year; rating input score 100; 77th percentile among comparable filings
• Asset growth: 17.3% per year; rating input score 100; 79th percentile among comparable filings