National Celiac Disease Patient Advocacy Summit Agenda

9:00 – 9:45               Registration and gluten-free breakfast

9:45 – 10:35             Opening remarks

2019 was a breakthrough year, with Congress, for the first time ever, instructing the National Institutes of Health to study celiac disease. 2020 holds even more promise in accelerating diagnosis and treatments. Hear from Congressional staff about the efforts on Capitol Hill to make celiac disease a national priority.

10:40- 11:25              Current State of Celiac Disease Diagnosis, Treatment 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. Learn from Edwin Liu, MD, Director of the Children’s Hospital Colorado Center for Celiac Disease and Daniel Leffler, MD, Director of Clinical Research at the Beth Israel Deaconess Celiac Center, why this is, and what to include in your story when discussing celiac disease and the impact of a gluten-free diet with your Congressional representatives.

11:35-12:20              Today and Tomorrow in Biopharmaceutical Research, 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, Francisco Leon, MD, PhD, of Provention Bio, and Jack A. Syage, PhD, of ImmunogenX, as they share their experiences developing celiac disease treatments.

12:20-1:00               Gluten-free lunch

1:00-1:35                   Patient Engagement Perspectives from the FDA

The Food and Drug Administration is responsible for protecting the public health by ensuring the safety, efficacy, and security of drugs, biological products, medical devices, and food. Each individual patient may experience the effects of diseases and therapies differently than other patients, and have unique perspectives about treatments or diagnostic procedures. Patient input plays an important and increasing role in the development and enforcement of FDA regulated products. Susan Chittooran, Patient Engagement Project Manager for the Patient Affairs Staff, will speak on how the FDA engages the patient perspective to amplify the voices and experiences of patients in its ongoing activities. Carol D’Lima, PhD, Food Technologist for the Office of Nutrition and Food Labeling, will speak on how the FDA enforces the Gluten-Free Labeling Rule.

1:40-2:50                 Celiac Disease Foundation State Advocacy Ambassador Training

Join us for an in-depth dive into our year-round advocacy efforts and learn how you can be involved to help us continue securing advocacy victories for the entire celiac community. Sheila Burke and Mark Van de Water of Baker Donelson will discuss the issues we are taking to Capitol Hill, prepare you to tell your story in the most impactful way, explain how to structure a congressional meeting, and make sure you are fully prepared for successful meetings with your members of Congress in your home state. You will hear first-hand and gain tips from others who have successfully shared their stories. This training will empower you to become effective Celiac Disease Foundation State Advocacy Ambassadors.

2:50-3:00               Closing remarks

To close out the day, the Foundation’s Advocacy Team will discuss next steps with you, our newly trained Celiac Disease Foundation State Advocacy Ambassador. Foundation staff will be present to answer any questions you might have. We thank you for your participation in the National Celiac Disease Patient Advocacy Summit and look forward to hearing about your advocacy efforts in your home state.