What You Need to Know Video Series

Once thought to be a rare childhood disease, celiac disease is now recognized as one of the world’s most common genetic autoimmune disorders. Despite this recognition, it is estimated that only about 20% of Americans with celiac disease are diagnosed and upwards of 50% of patients are still symptomatic on the gluten-free diet. Learn from Edwin Liu, MD, Director, Colorado Center for Celiac Disease, and Young Investigator Awardees Benjamin Lebwohl, MD, Columbia Celiac Disease Center, and Jocelyn Silvester, MD, PhD, Harvard Celiac Research Program, why this is, and the state of patient engagement at academic research centers.

Innovative research is required to find a cure for any disease, but until recently, federal funding for celiac disease has been limited, creating a shortage of resources for researchers. This session will focus on innovations in celiac disease biopharmaceutical research and the importance of federal funding. Join ImmunogenX Co-Founder and Chief Scientific Officer, Jennifer Sealey-Voyksner, PhD, as she discusses the importance of federal funding to biopharmaceutical research. Learn about the history of celiac disease drug development from Francisco Leon, MD, PhD, of Provention Bio, why endpoints matter from Daniel Leffler, MD, of Takeda, and why patient participation is critical to finding treatments from Kristin Neff of Anokion.

In 2016, through a Patient-Centered Outcomes Research Institute (PCORI) award, the Celiac Disease Foundation launched the Patient Engagement Celiac Disease Network to meet the growing public health challenge of diagnosing and treating celiac disease by developing an educated patient/stakeholder network of individuals who can fully participate in and collaborate in celiac disease research. Join Lisa Stewart, PCORI Senior Engagement Officer, CEO Marilyn G. Geller, member of the PCORI Patient Engagement Advisory Panel, celiac disease drug developers, and our patient advocates as they discuss how to better engage patients as partners in research.

Federal funding is critical to advancing research for the treatment and cure of celiac disease. Beginning with CEO Marilyn G. Geller’s testimony before the House Appropriations Subcommittee in April of 2019, the Celiac Disease Foundation has worked to secure FY2020 and FY2021 Appropriations report language directing the NIH to devote sufficient, focused research to the study of celiac disease. Join Joseph A. Murray, MD, of the Mayo Clinic, as he discusses his experience working with the National Institutes of Health (NIH) and the importance of NIH research.  Hear from Ritu Verma, MD, Director, University of Chicago Celiac Disease Center, why your support of the Medical Nutrition Therapy Act of 2020, and other policy initiatives will lead to better health for all celiac patients. Learn from Vanessa Weisbrod of Boston Children’s Hospital, about the Celiac Disease School Training Program to standardize 504 Plan accommodations that you can share with your schools.

Complete the iAdvocate Training Program to learn how you can engage with your legislators and activate your networks to drive successful policy campaigns in your state.