For the nearly 3 million Americans living with celiac disease, progress in research is not moving fast enough. Despite being a common genetic autoimmune disease, celiac disease remains dramatically underfunded compared to other conditions with similar prevalence and impact. Without federal investment, researchers lack the resources needed to pursue new diagnostics, better treatments, and one day, a cure. That is why participation in federal research conversations matters.
Earlier this month, the Celiac Disease Foundation was honored to represent the celiac community at a high-level federal government roundtable, delivering a statement on behalf its Society for the Study of Celiac Disease (SSCD). This meeting plays a direct role in shaping how millions of dollars in federal medical research funding may be allocated in the coming year through the Congressionally Directed Medical Research Program – Peer Reviewed Medical Research Program (CDMRP-PRMRP). The program exists to fund impactful, innovative biomedical research that addresses the needs of the American public, the military, and Congress.
At this roundtable, federal leaders sought input from the Foundation to inform the Strategic Goals for the Autoimmune Disorders and Immunology Portfolio for Fiscal Year 2026 (FY26). Having a seat at this table ensures that celiac disease and the experiences of the patients who live with it every day remain visible and prioritized. Our participation helps shape future funding announcements, which can create meaningful opportunities for researchers to study celiac disease and pursue breakthroughs in diagnosis, treatment, prevention, and ultimately, a cure.
For more than two decades, PRMRP has distributed an annual appropriation guided by Congressionally mandated “Topic Areas.” These Topic Areas are grouped into scientific “Portfolios,” given Strategic Goals designed to address major research gaps and unmet medical needs.
Thanks to persistent advocacy from the Celiac Disease Foundation and key Congressional champions, celiac disease was included for the first time in FY2023 as an eligible Topic Area in the Autoimmune Disorders and Immunology Portfolio and has remained eligible every year since. This progress has already had a measurable impact:
- FY23: Approximately $6.6 million awarded to two celiac disease research applications (with seven compliant applications submitted)
- FY24: $1.58 million awarded to one celiac disease application (with 14 compliant applications submitted)
Being recognized and being invited to participate in this Roundtable discussion sends a powerful message to our community: you are seen, your needs are real, and your government is listening.
The Celiac Disease Foundation and its SSCD will continue fighting for increased resources, expanded research opportunities, and recognition from every available federal research program. Together with the advocates, researchers, and families who make this work possible, we remain committed to driving progress toward a future where no one has to fear the daily consequences of this disease.