I’m writing to invite you to join me and others from across the healthcare community at the 2019 Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, being held September 18-20 at the Marriott Wardman Park Hotel in Washington, DC. As a member of PCORI’s Advisory Panel on Patient Engagement, I know firsthand that PCORI’s staff is…
Continue ReadingOur vision is clear: the Celiac Disease Foundation seeks to accelerate research to identify treatments and a cure for celiac disease. Since our founding almost 30 years ago, we have known that successful fulfillment of this vision demanded that we be the voice of the celiac community in the corridors of power in and around…
Continue ReadingCeliac.org has a new look. With more than 6.5 million unique visitors annually, Celiac.org is, by far, the most visited celiac disease site in the world. This new look, created specifically for our online community of celiac disease patients and caregivers, healthcare professionals and researchers, as well as our general visitors, offers a streamlined design,…
Continue ReadingAs we begin this season of giving, I am proud to share with you the work that your gifts and support make possible. In our 2016-2017 Annual Report, you can learn about: iCureCeliac®, the nation’s only celiac disease patient registry, helping researchers to find new treatments and a cure for celiac disease Our Patient Advocacy…
Continue Reading2016 has been another milestone year for Celiac Disease Foundation. We began the year launching the revolutionary iCureCeliac® patient registry, the cornerstone of a systematic and cooperative approach between academia, private industry, and patient advocates to apply the principals of precision medicine to developing treatments and a cure for celiac disease. Over the course of…
Continue ReadingThis month, Celiac Disease Foundation launched the Pediatric and Adult Celiac Disease Follow-up Checklists. Based upon recommendations from the world’s leading medical experts, the Follow-Up Checklists specify best practices in post-diagnosis celiac disease management to assure optimal patient care.
Continue ReadingThank you to our more than 1,000 iCureCeliac participants for your amazing commitment to help researchers advance treatments and a cure for celiac disease and gluten sensitivity. I am pleased to share with you that we already have two research studies in place! The first is with Celimmune who is sponsoring clinical trials to test a drug…
Continue ReadingI have long supported walks and runs for charitable causes. In fact, before I became CEO of Celiac Disease Foundation, my son Henry and I participated in both the Los Angeles and Pasadena Marathon 5K Run/Walks to raise funds for Team Gluten-Free. I walked, Henry ran. This is probably why I was so moved when…
Continue ReadingLast month, the Celiac Disease Foundation had the privilege of sponsoring the 2024 International Celiac Disease Symposium in Sheffield, UK. As the first patient advocate invited to chair and present on a scientific panel, CEO Marilyn Geller co-chaired the End Points in Clinical Trials session with Dr. Francisco Leon, CEO...