When you spend years navigating a chronic disease for your child, you learn quickly that having a voice in the rooms where decisions get made matters enormously. That is why the recent announcement from the Celiac Disease Foundation caught my attention: CEO Marilyn Geller has been appointed to the Research & Programs Committee of the National Health Council.
This might sound like inside-baseball nonprofit news. But for celiac families, it represents something concrete—a direct line from our community to the organization that helps shape how healthcare research, programs, and policy get prioritized across more than 170 member organizations representing patients with chronic diseases.
Why This Appointment Matters
The National Health Council is not a household name, but its influence on healthcare policy is substantial. The organization brings together patient advocacy groups, healthcare professionals, and other stakeholders to ensure that patient perspectives inform decisions about research funding, program design, and policy direction. When the NHC weighs in on an issue, legislators and federal agencies listen.
For celiac disease, this kind of representation has historically been lacking. Despite affecting roughly 1% of the population—and remaining undiagnosed in an estimated 80% of those who have it—celiac disease often gets overlooked in broader healthcare conversations. Autoimmune conditions with similar prevalence rates, like type 1 diabetes, have long had stronger advocacy infrastructure and more consistent seats at policy tables.
Geller’s appointment to the Research & Programs Committee means celiac disease will have a voice when the NHC discusses priorities for healthcare research and program development. The committee works collaboratively to provide input on research and programmatic efforts across disease areas, which means celiac-specific concerns can now be raised alongside those of other chronic conditions.
Building on Momentum
This appointment does not exist in isolation. The Celiac Disease Foundation has been systematically building its advocacy and research capacity over the past several years.
Earlier this year, we covered the Foundation’s launch of the Venture Philanthropy Impact Fund, an innovative approach to accelerating therapeutic development for celiac disease. That initiative represented a shift toward more aggressive investment in getting treatments to market—not just waiting for pharmaceutical companies to prioritize celiac on their own timelines.
The Foundation has also been working to ensure that federal research dollars flow toward celiac disease science. As we discussed in our coverage of how federal research funding is advancing celiac disease science, sustained advocacy is required to maintain and increase NIH funding for celiac research.
Geller’s NHC appointment adds another dimension to this work. While the Venture Fund focuses on therapeutic development and federal advocacy targets research dollars, the NHC position provides influence over how healthcare programs and research priorities are shaped across the broader chronic disease landscape.
What the Research & Programs Committee Actually Does
The NHC’s Research & Programs Committee is responsible for setting priorities and ensuring that patient needs are reflected in how healthcare initiatives are designed and implemented. In practical terms, this means committee members weigh in on:
- Which research areas deserve prioritization
- How patient perspectives should be incorporated into study design
- What programmatic resources the NHC should develop or support
- How to measure whether healthcare initiatives are actually serving patients
For celiac disease, this creates opportunities to advocate for several priorities that have long been underserved. Diagnostic delays remain a persistent problem—most celiac patients wait six to ten years between symptom onset and diagnosis. Research into better screening protocols, physician education programs, and public awareness campaigns could all benefit from NHC attention.
Similarly, quality-of-life research for celiac patients has been historically underfunded. We know the gluten-free diet is burdensome, that social situations create anxiety, and that even well-managed celiac disease affects daily life in ways that are difficult to quantify. Having an advocate on the Research & Programs Committee who understands these lived realities could help push for more holistic research approaches.
The Long Game of Advocacy
As a celiac parent, I have learned that meaningful change happens slowly. My son was diagnosed years ago, and while the landscape has improved—more gluten-free options in stores, better labeling requirements, increased awareness—progress often feels incremental when you are living with the daily reality of managing a chronic condition.
Appointments like this one are part of the long game. They do not produce immediate, visible changes. You will not see the effects of Geller’s NHC work at the grocery store next month or in your child’s school cafeteria next year. But over time, having celiac disease represented in these policy conversations shapes the environment in which research gets funded, programs get designed, and decisions get made.
The NHC’s influence extends to federal agencies, insurance companies, healthcare systems, and research institutions. When celiac disease has a voice in those discussions, it becomes harder for decision-makers to overlook or deprioritize the condition.
What Celiac Families Can Do
Advocacy at the national level works best when it is supported by an engaged community. While Geller does the work of representing celiac interests on the NHC committee, there are ways for celiac families to strengthen that advocacy:
Join the iCureCeliac Patient Registry. The Foundation’s patient registry provides the data that supports advocacy arguments. When Geller can point to registry data showing diagnostic delays, quality-of-life impacts, or treatment needs, those arguments carry more weight than anecdotal reports alone.
Participate in research when opportunities arise. Clinical trials and research studies need participants. The more robust the celiac research base, the stronger the case for continued investment.
Stay informed and share information. Awareness among healthcare providers, educators, and the general public creates a more supportive environment for policy change. When more people understand what celiac disease actually involves, advocacy arguments resonate more effectively.
Contact your representatives about celiac-related legislation. Federal funding for celiac research, school meal accommodations, and other policy priorities benefit from constituent pressure. The Foundation’s advocacy resources can help identify current opportunities.
Looking Forward
The celiac disease community has come a long way from the days when most physicians had never heard of the condition and gluten-free products were confined to specialty health food stores. But significant gaps remain—in diagnosis rates, in treatment options, in quality-of-life support, and in public understanding.
Geller’s appointment to the National Health Council Research & Programs Committee represents one more step toward closing those gaps. It is not a solution in itself, but it is the kind of structural progress that makes other progress possible.
For celiac families, this is worth noting and worth supporting. The work of advocacy often happens in rooms we never see, through conversations we never hear. Having someone in those rooms who understands what celiac disease actually means for patients and families is no small thing.
Related Coverage
- Celiac Disease Foundation Launches Venture Fund to Transform the Future of Celiac Disease
- How Federal Research Funding Is Advancing Celiac Disease Science
References
- Celiac Disease Foundation. “Marilyn Geller Appointed to National Health Council Research & Programs Committee.” April 2, 2026. https://celiac.org/2026/04/02/marilyn-geller-appointed-to-national-health-council-research-programs-committee/