The purpose of the Celiac Disease Foundation Patient Education & Advocacy Summit is to address the serious public health challenge of treating celiac disease by further developing an educated patient/stakeholder network trained to advocate for federal recognition and funding of celiac disease needs. The Summit, supported by a Eugene Washington PCORI Engagement Award, will foster collaboration between research enterprise stakeholders and patient advocates in determining how best to engage patients as partners in research.

The Celiac Disease Foundation identified key leaders, visionaries, and stakeholders, including patients, caregivers, family members, clinicians, researchers, and policy advisors to form the patient-led Summit Advisory Council. The Summit Advisory Council is tasked with overseeing the meeting program and assuring it is patient-centered.

Summit Advisory Council Members

Josh Denney– Patient Advocate, Senior Vice President, Director of Government Affairs, BBVA

Ben Lebwohl, MD, MS– Columbia Celiac Disease Center, Young Investigator Award Recipient

Edwin Liu, MD– Director, Colorado Center for Celiac Disease

Joseph A. Murray, MD– Mayo Clinic

Duane Musser– Patient Advocate, Vice President, Government Relations, National Roofing Contractors Association

Jennifer Sealy-Voyksner, PhD– Patient Advocate, Chief Scientific Officer and Co-Founder, ImmunogenX

Kelsey Smith– Patient Advocate, Apple Leadership, iAdvocate Forum Moderator

Jocelyn Silvester, MD, PhD– Patient Advocate, Harvard Celiac Research Program, Young Investigator Award Recipient

Ritu Verma, MD– Patient Advocate, Director, University of Chicago Celiac Disease Center

Vanessa Weisbrod– Patient Advocate, Director, Celiac Disease Program, Boston Children’s Hospital