As we look toward the summer months, the team here at the Celiac Disease Foundation is actively working on a number of new projects that are vital to elevating our mission to promote diagnosis, treatments, and a cure for celiac disease. There is one initiative in particular that I’m excited to share with you – convening our first official meeting of the Celiac Disease Foundation Research Working Group (CDF-RWG) next month.
This collaborative effort is specifically designed to build on the progress we have made in the federal advocacy arena, and to secure a clear path for the development of treatments and funding for celiac disease at the federal level, all while facilitating the information-sharing needed to accelerate novel therapies and assure federal protections for people with celiac disease.
The CDF-RWG is composed of experts from different fields and sectors, including researchers from academia, biopharmaceutical professionals, and, as appropriate, representatives from the U.S. government regulatory agencies and the Legislative branch. It will seek to identify and share opportunities to elevate the needs and concerns of patients to national policy makers and federal regulators, as well as to identify and resolve common barriers related to the development of U.S. Food and Drug Administration-approved treatments and cures for celiac disease. The group will broadly discuss 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.
Our selected topic for the month of July is “Gluten in Medicine” – a topic we know is of overwhelming interest and concern to our broad patient community. We applaud current legislative efforts to provide consumers the information they need about the medications necessary to ensure their quality of life, and during this discussion we will be seeking feedback and insights from the CDF-RWG that will inform our legislative and regulatory advocacy efforts on this topic during the 118th Congress. We are specifically requesting comments on pending legislation that seeks to require labeling of gluten-containing grains and their derivatives on drugs intended for human use.
We look forward to keeping you updated on the efforts of the CDF-RWG and our federal advocacy. Together – and with your ongoing, generous support – we will continue making a difference for the millions of people living with celiac disease. As always, please reach out if you have any ideas, questions, or thoughts you would like to share with me or our team.
To Our Health,
Marilyn G. Geller
Chief Executive Officer