As part of our rapidly expanding efforts to secure a clear path for the development of treatments and funding for celiac disease at the federal level, the Celiac Disease Foundation is announcing its newly-created CDF Research Working Group: a collaborative effort specifically designed to build on the progress we have made in the federal advocacy arena.
The CDF Research Working Group (CDF-RWG) will identify and share opportunities to elevate the needs and concerns of patients to national policy makers and federal regulators, as well as identify and resolve common barriers related to/involved with the development of FDA approved treatments and cures for celiac disease. As part of this charge, the group will review the current state of celiac disease research, identify gaps and challenges – particularly in drug development – share best practices and lessons learned, and propose recommendations for future actions.
BACKGROUND
As the world’s leading patient advocacy organization for celiac disease, we work every day on behalf of the patient community to accelerate diagnosis, treatment, and a cure through research, advocacy, and education.
In just three years since our partnership with the Society for the Study of Celiac Disease (SSCD) and the Celiac Disease Center at Columbia University in hosting a global Consensus Conference which established research priorities for celiac disease, we have:
- Established the House Celiac Disease Caucus
- Compelled NIH to issue a Notice of Special Interest for celiac disease research with specific mention as a topic of importance in NIAID’s FY2024 Congressional Justification
- Been recognized by the NIH Autoimmune Diseases Coordinating Committee for creating the model for other autoimmune diseases to achieve NIH funding
- Collaborated with SSCD and our biopharmaceutical and research community at DDW 2022 to submit comments on the US Food and Drug Administration guidelines for the clinical FDA Draft Guidance Celiac Disease: Developing Drugs for Adjunctive Treatment to a Gluten-Free Diet
- Successfully lobbied for the inclusion of celiac disease in the 2023 U.S. Department of Defense Congressionally Directed Medical Research Program
- And most recently, submitted comments to the USDA for the inclusion of celiac disease accommodations in the WIC Food Package Proposed Rule on behalf of more than twenty leading celiac disease organizations and programs
The CDF-RWG will regularly convene experts from different fields and sectors, including researchers from academia, biopharmaceutical professionals, and, as appropriate, representatives from the Executive and Legislative branches of the U.S. government to facilitate the information-sharing that will accelerate the development of novel therapies and assure federal protections for people with celiac disease.