Last week, the Celiac Disease Foundation brought 35 passionate advocates from across the country to Washington, D.C. for our 2026 Advocacy Summit. After a day of training and collaboration, these dedicated members of the celiac disease community headed to Capitol Hill, meeting with more than 60 congressional offices across the House and Senate to champion policies that advance research, improve care, and move us closer to better treatments and ultimately, a cure for celiac disease.
At a time when many federal health and research programs face significant funding pressures, our advocates’ voices are more important than ever. By sharing their personal stories and highlighting the urgent needs of the celiac disease community, they helped ensure that policymakers understand the importance of continued investment in research and resources that support patients and their families.
The Foundation is grateful to Chugai Pharmaceutical for generously sponsoring this year’s Advocacy Summit and helping make this powerful advocacy effort possible. Their support helped bring together advocates from all across the country to ensure the celiac disease community was represented on Capitol Hill.
Learning to Be Effective Advocates
Before heading to Capitol Hill, participants kicked off the Advocacy Summit with a full day of training, where they learned about the legislative process, the current policy landscape, and how to effectively communicate their experiences with lawmakers and staff. Advocates practiced sharing their stories, refined their policy messages, and prepared to meet with congressional offices the following day.
We are especially grateful to the Celiac Disease Program at Children’s National Hospital for generously hosting our training day in their beautiful, sun-filled Research Atrium overlooking the U.S. Capitol. The inspiring setting provided the perfect environment for advocates to learn, connect, and prepare for their meetings on Capitol Hill. Special thanks to Dr. Vahe Badalyan, Dr. Shayna Coburn, and Kate Raber for making it possible for us to gather in such a remarkable space and for their support of the celiac disease advocacy community.
For many attendees, especially our younger advocates, this was their first opportunity to see how civic engagement can create real change. Through training sessions and collaborative discussions, advocates gained the tools and confidence to speak up for themselves and the broader celiac disease community.
Taking the Message to Capitol Hill
Armed with their personal stories and advocacy training, participants met with lawmakers and congressional health staff to promote three key policy priorities:
- Continued federal funding for celiac disease research through the National Institutes of Health (NIH) and the Department of Defense (DOD).
- Expansion of the Congressional Celiac Disease Caucus, encouraging more members of Congress to support policies that advance research, education, and awareness.
- Insurance coverage for dietitian visits through the Medical Nutrition Therapy Act of 2025 (H.R. 6199/S. 3949), ensuring patients can access the nutrition care essential for treating celiac disease.
Throughout the day, advocates shared firsthand accounts of delayed diagnosis, the burden of maintaining a strict gluten-free diet, and the ongoing need for better diagnostics, treatments, and education. Lawmakers and their staff listened closely as advocates explained how federal investment in research and patient support can transform lives.
Looking Ahead
The momentum from the 2026 Advocacy Summit and Hill Day will continue long after the final meetings on Capitol Hill. With advocates speaking up across the country and policymakers increasingly aware of the needs of the celiac disease community, we are building a stronger foundation for progress.
But there is still work to do. Continued advocacy is essential to advancing research funding, improving care, and accelerating the path toward new treatment options for celiac disease.
Together, by sharing our stories and raising our voices, we can create lasting change for everyone affected by celiac disease and ensure our community continues to be heard in Washington.
Become a Celiac Disease Foundation Policy Advocate Today!
