When Azi was first diagnosed with celiac disease, I felt overwhelmed by the daily challenges—reading every label, coordinating with his school, watching him navigate birthday parties where he couldn’t eat the cake. But as I’ve grown into this journey alongside him, I’ve come to understand that the challenges we face at home are connected to something much larger: the policies, research funding, and federal priorities that shape how celiac disease is understood, treated, and ultimately, whether we’ll ever see a cure.
That’s why news from Washington, D.C. last week felt so significant. The Celiac Disease Foundation brought 35 advocates from across the country to Capitol Hill for their 2026 Advocacy Summit, and together, they met with more than 60 congressional offices to champion the policies that matter most to our community.
This is what grassroots advocacy looks like—and it’s how change happens.
What Happened at the 2026 Advocacy Summit
The Advocacy Summit, held in early March, brought together passionate members of the celiac community for two intensive days of action. The first day focused on training and collaboration, preparing advocates to share their stories effectively and understand the policy landscape. The second day was all about action: heading to Capitol Hill to meet directly with members of Congress and their staff.
According to the Celiac Disease Foundation’s announcement, these 35 advocates met with representatives across both the House and Senate, spanning more than 60 offices. Their mission? To champion policies that advance research, improve care, and move us closer to better treatments—and ultimately, a cure for celiac disease.
As the Foundation noted, this work comes “at a time when many federal health and research programs face significant funding pressures.” That context makes these advocacy efforts even more critical.
Why Advocacy Matters for Celiac Disease
For those of us living with celiac disease—or parenting children who do—it can sometimes feel like our condition exists on the margins. Despite affecting an estimated 1 in 100 people worldwide, celiac disease remains underdiagnosed, underfunded, and often misunderstood, even by healthcare providers.
Consider some of the realities our community faces:
Research funding is limited. Compared to other autoimmune conditions, celiac disease receives a fraction of federal research dollars. This directly impacts the development of new treatments, diagnostic tools, and our understanding of the disease’s long-term effects.
Diagnosis delays are common. Studies have shown that the average person with celiac disease waits years—sometimes more than a decade—before receiving a correct diagnosis. During that time, they may suffer ongoing damage and complications that could have been prevented with earlier intervention.
The only treatment is a strict gluten-free diet. While many of us have become experts at managing this, we know how difficult it can be. A single instance of cross-contact can cause symptoms and intestinal damage. Unlike many other conditions, there are no medications to help manage celiac disease. We’re entirely reliant on our own vigilance and the accuracy of food labeling.
There is no cure. This is the reality that drives so much of the advocacy work. We need continued and expanded research to develop treatments that go beyond dietary management—and to ultimately find a cure.
When advocates show up in Washington to share their personal stories, they humanize these statistics. They help legislators understand that celiac disease isn’t just about avoiding bread—it’s about quality of life, health outcomes, and the need for meaningful investment in research.
The Power of Personal Stories
One of the most effective tools in any advocate’s toolkit is their own story. When someone sits across from a congressional staffer and explains what it’s like to watch their child get sick from a well-meaning relative’s cooking, or describes the anxiety of eating out, or shares the financial burden of specialty foods—these stories create impact in ways that data alone cannot.
The Celiac Disease Foundation’s approach to advocacy recognizes this. Their training day prepared advocates not just with policy talking points, but with the skills to share their experiences authentically and effectively.
I think about the stories I could tell: the careful coordination with Azi’s school to ensure his meals are safe, the conversations with teachers about why he can’t just “pick off” the croutons, the relief when we find a restaurant with a dedicated gluten-free facility that I actually trust. These aren’t dramatic stories, but they’re real ones—and multiplied across millions of families, they represent a significant public health concern that deserves attention and resources.
What Policies Are Advocates Pushing For?
The Celiac Disease Foundation maintains a comprehensive 2026 Public Policy Agenda that outlines the community’s priorities. While specific legislative asks may vary, the core goals typically include:
Increased Research Funding
Advocates push for increased appropriations to the National Institutes of Health (NIH) and other federal agencies that fund celiac disease research. This includes support for basic science research, clinical trials, and the development of new treatments.
Improved Diagnosis and Care
Policy efforts often focus on improving diagnosis rates, reducing the time to diagnosis, and ensuring that healthcare providers have the training and resources to properly identify and manage celiac disease.
Food Safety and Labeling
While the FDA has established gluten-free labeling standards, there’s always room for improvement and enforcement. Advocates work to ensure that labeling requirements are maintained and that consumers can trust the products they buy.
Support for Clinical Trials
Advancing new treatments requires robust clinical trial infrastructure. The Foundation’s iCureCeliac Patient Registry helps connect patients with research opportunities, and advocacy efforts support the policies that make this research possible.
Why This Moment Is Critical
The Foundation specifically noted that this advocacy work comes at a time when “many federal health and research programs face significant funding pressures.” This is an important context that shouldn’t be overlooked.
Federal budgets are always subject to competing priorities, and health research funding can be vulnerable to cuts. When advocates show up to make the case for celiac disease research, they’re not just asking for new money—they’re often fighting to maintain existing programs and ensuring that celiac disease remains a priority.
This is why sustained advocacy matters. It’s not enough to show up once and hope for the best. The Celiac Disease Foundation’s annual summit represents a consistent, ongoing effort to keep celiac disease on legislators’ radar screens.
How You Can Get Involved
Reading about advocacy efforts from afar can feel both inspiring and a bit frustrating. Not everyone can travel to Washington, D.C. for a summit. But there are meaningful ways to participate in advocacy from wherever you are:
Become a Policy Advocate
The Celiac Disease Foundation offers opportunities to become a policy advocate. This can include signing up for action alerts, contacting your own representatives, and staying informed about policy developments.
Share Your Story
You don’t have to be in Washington to share your story. Writing to your representatives, participating in local events, or even sharing your experiences on social media can help raise awareness and build support for the policies our community needs.
Join the iCureCeliac Registry
Research advocacy isn’t just about policy—it’s also about participation. By joining the iCureCeliac Patient Registry, you can contribute to research efforts and potentially qualify for clinical trials that are advancing treatment options.
Support Advocacy Organizations
Organizations like the Celiac Disease Foundation do this work year-round, not just during summit season. Supporting them through donations, volunteering, or simply spreading the word about their efforts helps sustain the advocacy infrastructure our community needs.
Talk to Your Healthcare Provider
Advocacy also happens in clinical settings. When you talk to your doctor about celiac disease, you’re helping to raise awareness within the medical community. If your healthcare provider seems unfamiliar with current best practices for celiac disease management, consider sharing resources from the Celiac Disease Foundation or other reputable organizations.
Looking Ahead
The 35 advocates who traveled to Washington, D.C. last week represented all of us. They carried our stories, our frustrations, and our hopes into those 60-plus congressional offices. They made the case that celiac disease deserves attention, funding, and action.
This is how progress happens—not overnight, but through consistent, persistent effort. Every meeting, every conversation, every story shared adds to the momentum.
As a parent navigating celiac disease with Azi, I’m grateful for these advocates and the organization that brought them together. The daily work of keeping my son safe is important, but so is the larger work of changing the landscape for everyone with celiac disease.
If there’s one takeaway from the 2026 Advocacy Summit, it’s this: our voices matter. Whether we’re speaking to a congressional office or explaining celiac disease to a school cafeteria worker, we’re all advocates in our own way. The more we speak up, the harder we become to ignore.
And that’s how we move closer to better treatments, better care, and ultimately, a cure.
If you’re interested in celiac disease advocacy or want to learn more about the Celiac Disease Foundation’s policy work, please consult their official resources. For any health concerns or questions about managing celiac disease, always consult with your healthcare provider.
References
-
Celiac Disease Foundation. (2026, March 13). Celiac Disease Advocates Take to Capitol Hill for our 2026 Advocacy Summit. https://celiac.org/2026/03/13/celiac-disease-advocates-take-to-capitol-hill-for-our-2026-a/
-
Celiac Disease Foundation. 2026 Public Policy Agenda. https://celiac.org/get-involved/advocacy-and-public-policy/
-
Celiac Disease Foundation. Become a Policy Advocate. https://celiac.org/get-involved/advocacy-and-public-policy/become-a-policy-advocate/
-
Celiac Disease Foundation. iCureCeliac Patient Registry. https://celiac.org/advancing-research/icureceliac-patient-registry/