Highlights from the 2020 Celiac Disease Foundation National Patient Advocacy Summit 

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 autoimmune disorders. Despite this recognition, it is estimated that only about 20-40% of Americans with celiac disease are diagnosed. Learn from Edwin Liu, MD, Director of the Children’s Hospital Colorado Center for Celiac Disease, Daniel Leffler, MD, Director of Clinical Research at the Beth Israel Deaconess Celiac Center, and Peter H.R. Green, MD, Director of the Celiac Disease Center at Colombia University, why this is.

Gluten Exposed: The Science Behind the Hype and How to Navigate to a Healthy Symptom-Free Life

Learn about celiac disease risk factors, testing, and treatment from Peter H.R. Green, MD, Director of the Celiac Disease Center at Columbia University.

The Gluten-Free Diet is Not a Cure

Dan Leffler, MD, MS, Medical Director at Takeda Pharmaceuticals and Director of Clinical Research at the Beth Israel Deaconess Celiac Center, addresses the inadequacies of the gluten-free diet as a treatment for celiac disease.

What You Need to Know About Pediatric Celiac Disease

Edwin Liu, MD, Director of the Colorado Center for Celiac Disease and Professor of Pediatrics at Children’s Hospital Colorado, examines the prevalence of celiac disease in children and why it is a public health problem.

Biopharmaceutical Developments Toward Treatments and a Cure

Innovative research is required to find a cure for any disease, but until recently, federal funding for celiac disease has been nonexistent, 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 Daniel Leffler, MD, of Takeda Pharmaceuticals and Francisco Leon, MD, PhD, of Provention Bio as they share their experiences developing celiac disease treatments.

Today and Tomorrow in Biopharmaceutical Research, Treatments, and a Cure

Dan Leffler, MD, MS of Takeda Pharmaceuticals and the Celiac Center at Beth Israel Deaconess Medical Center, talks about what it’s going to take to find better treatments and a cure for celiac disease.

The Need for NIH Support to Develop Successful Solutions for the Three Million Americans with Celiac Disease

Francisco Leon, MD, PhD, Chief Scientific Officer of Provention Bio, explains why NIH funded research is necessary to propel drug development, and what it will take to develop better treatments and a cure for celiac disease.

Patient Engagement and Labeling Perspectives from the FDA

The US Food and Drug Administration (FDA) is responsible for protecting the public health by ensuring the safety, efficacy, and security of drugs, biological products, medical devices, and food. Learn from Susan Chittooran, Patient Affairs Patient Engagement Project Manager, how the FDA engages the patient perspective in its ongoing activities. Learn from Carol D’Lima, PhD, Food Technologist in the Office of Nutrition and Food Labeling, how the FDA enforces the Gluten-Free Food Labeling Rule.

How the FDA Involves Patient Advocates

Susan Chittooran, MSW, of the FDA’s Patient Affairs Staff, discusses the different ways the FDA involves patient advocates in its ongoing activities.

Gluten-Free Labeling of Foods

Carol D’Lima, PhD, Food Technologist in FDA’s Center for Food Safety and Applied Nutrition, shares the rules and regulations for labeling of gluten-free foods.

Advocating with the Celiac Disease Foundation

Celiac disease is the one of the world’s most prevalent genetic autoimmune diseases, affecting an estimated 3 million Americans, 70-80% of whom are undiagnosed. Causing the body to attack its own small intestine, it can lead to many other devastating health conditions, including cancer. Unfortunately for the millions who suffer, celiac disease has largely been ignored by our federal government which provides little to no funding for research nor for public awareness of its serious consequences. Through strategic investments in research, education, and advocacy, the Celiac Disease Foundation seeks to remedy this by accelerating treatments and a cure.

About the Foundation

Hear from Marilyn G. Geller, Celiac Disease Foundation CEO, about the Foundation’s important advocacy work over the last 30 years and the ongoing efforts on Capitol Hill to make celiac disease a national priority.