Last week the Celiac Disease Foundation convened the Global Celiac Advocacy Alliance (GCAA) Strategic Planning Summit on September 9 as part of the 2025 Tampere Celiac Disease Symposium (TCDS2025). Leaders of national patient advocacy organizations from 13 countries participated including leadership from the Association of European Coeliac Societies (AOECS) representing European patient organizations. Together, they worked to strengthen collaboration and ensure that the global patient voice remains central to shaping the future of celiac disease care, research, and food policy.
The agenda included updates on international Codex policy efforts, following the October 2024 Codex Committee on Food Labeling meeting in Québec, where Foundation CEO Marilyn Geller participated as part of the U.S. Delegation. Discussions focused on how Codex Precautionary Allergen Labeling (PAL) should account for celiac disease and all gluten-containing cereals (wheat, rye, and barley). The Summit also featured a Gluten Safety and Regulatory Standards Roundtable with members of the International Society for the Study of Celiac Disease (ISSCD) Gluten Safety & Standards Committee (GSSC) to address gluten ingestion thresholds, collaborations with FAO/WHO and Codex, implications for labeling and testing, and the role of patient advocacy organizations in advancing harmonized standards worldwide.
In the afternoon, the meeting focused on how new gluten safety thresholds may affect research and clinical trials, and how education and data tools can strengthen global collaboration. The day ended with a networking dinner co-hosted by the Celiac Disease Foundation and ISSCD, highlighting the value of partnerships between patients, researchers, and industry. The Foundation extends its gratitude to Sanofi, Takeda, and Topas Therapeutics for generously sponsoring the GCAA meeting and supporting this vital convening of global advocacy leaders.
The next day, experts from around the world gathered for the ISSCD Satellite Symposium on gluten safety. Dr. Kang Zhou of the Food and Agriculture Organization (FAO) shared plans for a major consultation of celiac experts this November to guide Codex food labeling standards. Another session led by Marilyn Geller and Dr. Dan Leffler, “Gluten Safety in Coeliac Disease – Stakeholder Views,” emphasized that patient voices must be central in these decisions. The ISSCD also introduced a new Gluten Safety & Standards Committee to help drive scientific evidence and policy that protect people with celiac disease worldwide.
The scientific program also featured landmark birth cohort studies including PreventCD, Glutenscreen, CDGEMM, and TEDDY, alongside research from population cohorts across Europe and North America. Presentations covered what makes some people more at risk for developing celiac disease, possible ways to prevent development of celiac disease, and new research on complex cases of celiac disease where symptoms persist despite a gluten-free diet.
As a sponsor of the Tampere Celiac Disease Symposium, the Foundation was proud to support this international convening of scientists, clinicians, and patient advocates. During the program, Dr. Robert Anderson, the Foundation’s Principal Science & Innovation Advisor, was awarded the prestigious Markku Mäki Prize for his pioneering contributions to advancing celiac disease science and policy. His contributions have shaped how celiac disease is understood and treated worldwide.
By convening the GCAA, leading discussions on Codex policy, sponsoring the Symposium, and ensuring patient perspectives remain central to global policymaking, the Celiac Disease Foundation reaffirmed its role as a catalyst for progress. From aligning on gluten safety standards to advancing clinical research and amplifying the patient voice, the Foundation continues to champion a world where people with celiac disease are protected, diagnosed earlier, and offered treatments beyond the gluten-free diet.