This Spring as part of its annual 2025 Advocacy Summit and Hill Day, the Celiac Disease Foundation also hosted its inaugural Youth Congress, a new program that will build on the Foundation’s longstanding commitment to federal advocacy, and will equip the next generation of leaders with the tools to influence the future of celiac disease policy in the United States.
Youth from across 14 states gathered in Washington, D.C. this March to learn about policymaking and to meet with their lawmakers. Through hands-on exercises, these young advocates drafted their own “bills” to raise awareness, improve safety, and increase education about celiac disease. Their proposals were creative, thoughtful, and deeply personal, rooted in their lived experiences with celiac disease, and included ideas to provide gluten-free meal options in schools, school staff education, funding public awareness to promote early diagnosis, and implementation of training for restaurant staff and gluten-free dining options.
Youth Congress participants also met with their congressional staff and some Members of Congress to share their personal experiences living with celiac disease and to advocate for the Foundation’s top policy priorities. These included:
- Increased federal funding for celiac disease research through the National Institutes of Health (NIH) and the Department of Defense (DOD).
- Expanding the House Celiac Disease Caucus, urging more congressional leaders to join the effort to promote policies that advance research, education, and quality of life measures for those living with celiac disease.
- Insurance coverage for medical nutrition therapy, ensuring that dietitian visits are covered to help patients properly manage their gluten-free diet.
For many of these young leaders, this was their first time participating in government advocacy—and they rose to the occasion with confidence and passion, learning how their voices can influence real change.
The Youth Congress also created a space for connection and community with others who understand the daily challenges of living with celiac disease. Together, they formed bonds and a shared sense of purpose that will last well beyond their time in our nation’s capital.
As the Foundation continues to build this program, we remain committed to ensuring that the next generation has the tools, confidence, and support to advocate for themselves and others living with celiac disease.
If your child or teen is interested in participating in the 2026 Youth Congress, please reach out to us at advocacy@celiac.org.
