What You Need to Know Video Series
Highlights from the 2021 Celiac Disease Foundation Patient Education & Advocacy Summit
Welcome from Celiac Disease Foundation Chief Executive, Marilyn G. Geller
Current State of Celiac Disease Diagnosis, Treatments and Clinical Research
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.
Epidemiology of Celiac Disease
Edwin Liu, MD, Taplin Endowed Chair for Celiac Disease and Director, Colorado Center for Celiac Disease, discusses the epidemiology of celiac disease.
Diagnosis and Management of Celiac Disease
Benjamin Lebwohl, MD, Director of Clinical Research at Columbia University’s Celiac Disease Center, addresses the diagnosis and management of celiac disease.
Celiac Disease Treatment Limitations, Management Gaps, and Solutions
Jocelyn Silvester, MD, PhD, Harvard Celiac Research Program and Pediatric Gastroenterologist at Boston Children’s Hospital, examines the treatment limitations, gaps, and potential solutions for celiac disease.
Innovations in Drug Development for Celiac Disease
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.
Federal Funding and Drug Development
Jennifer Sealey-Voyksner, PhD, Co-Founder and Chief Scientific Officer of ImmunogenX, talks about the importance of federal funding in the drug development process.
History of the Development of Medications for Celiac Disease
Francisco Leon, MD, PhD, Chief Scientific Officer and Co-Founder of Provention Bio, explains the history of celiac disease drug development, and what it will take to develop better treatments and a cure for celiac disease.
Why Endpoints Matter in Clinical Trials
Daniel Leffler, MD, Director of Clinical Research at Beth Israel Deaconess Celiac Center, and Medical Director, Takeda Pharmaceuticals, explains the importance of endpoints in clinical trials.
Why Should You Participate in a Clinical Trial?
Kristin M. Neff, Vice President, Clinical Operations, Anokion, discusses the importance of patient participation in clinical trials.
Engaging Patients as Partners in Research
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.
Engaging Patients as Partners in Research
Lisa Stewart, Senior Engagement Officer at the Patient-Centered Outcomes Research Institute (PCORI), explains PCORI’s mission to engage patients as partners in research, and how this engagement makes meaningful differences in research projects.
Patient Clinical Trial Experiences
Patient volunteers Elizabeth Carney, Jennifer Hale, Kelly Maynard, Andrea Monroe, and Kelsey Smith discuss their experiences participating in a celiac disease clinical trial.
Engaging and Strengthening Stakeholders
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.
The History and Importance of NIH Research
Hear from Joseph A. Murray, MD, Gastroenterologist at the Mayo Clinic, as he talks about the history and importance of NIH research.
Clinical Importance of Advocacy Initiatives
Hear from Ritu Verma, MD, ChB, Chief of Pediatric Gastroenterology, Hepatology, and Nutrition, and Medical Director at the University of Chicago Celiac Disease Center, about why your support of celiac disease public policy initiatives will lead to better health for all celiac patients.
Advocating for Celiac Disease Accommodations in Learning Environments
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.
Becoming a State Advocacy Ambassador
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.
Patient Advocacy Panel
Hear from patient advocates Josh Denney, Marc Jarjour, Duane Musser, and Kelsey Smith as they share their experiences advocating for the celiac community and explain why you should participate in advocacy.