Los Angeles, CA (February 19, 2020) – The federal government is the biggest provider of medical research funding, yet until recently celiac disease has not been the focus of research funding by the National Institutes of Health (NIH). The Celiac Disease Foundation has been working to remedy this. Following CEO Marilyn G. Geller’s testimony before the House Appropriations Subcommittee in April of 2019, Congress has directed the NIH to devote sufficient, focused research to the study of celiac disease.
While this is a landmark achievement for the celiac disease community, this request for celiac disease research funding and recognition will need to be renewed on a yearly basis, making community involvement in advocacy efforts more imperative now than ever. The Celiac Disease Foundation National Patient Advocacy Summit in Washington, DC, on February 27th will empower participants to urge Congress to increase critical celiac disease research funding and to support programs that will improve the lives of those impacted by the disease. The Summit will feature renowned celiac disease experts Edwin Liu, MD, Director of the Colorado Center for Celiac Disease at Children’s Hospital Colorado, and Daniel Leffler, MD, MS, Medical Director of Takeda Pharmaceuticals and Director of Clinical Research at the Celiac Center at Beth Israel Deaconess Medical Center, who will speak about the current state of celiac disease diagnosis, treatment, and clinical research. They will be joined by Francisco Leon, MD, PhD, CSO and co-founder of Provention Bio and Glutenostics, and Jack A. Syage, PhD, CEO and co-founder of ImmunogenX, who will share their experiences developing celiac disease biopharmaceutical treatments.
The Summit will also feature presentations from U.S. Food and Drug Administration (FDA) staff. Susan Chittooran, Patient Engagement Project Manager on the Patient Affairs Staff, will discuss how the FDA engages the patient perspective in its ongoing activities. Carol D’Lima, PhD, Food Technologist in the Center for Food Safety and Applied Nutrition’s (CFSAN) Office of Nutrition and Food Labeling, will address how the FDA enforces the Gluten-Free Labeling Rule.
A highlight of the Summit will be advocacy training to prepare participants to advocate in their home states as Celiac Disease Foundation State Advocacy Ambassadors. Sheila Burke and Mark Van de Water of Baker Donelson will discuss Celiac Disease Foundation public policy priorities, prepare advocates to tell their celiac disease story in the most impactful way, explain how to structure a congressional meeting, and assure that advocates are prepared for successful meetings with their Members of Congress.
“Celiac disease is a serious autoimmune disease that is not being taken seriously enough by our federal government. Celiac disease research receives virtually no investment from the private sector, and little to no resources from NIH, especially when compared to diseases with similar impact,” states Marilyn G. Geller, CEO of the Celiac Disease Foundation. “The FY2020 budget report language directing NIH to study celiac disease is a monumental win for the celiac community. We must continue this momentum by empowering our patients and caregivers to use their powerful voices to compel legislative change.”
For those who are unable to attend the National Patient Advocacy Summit, the Celiac Disease Foundation will launch an online advocacy training program later in the year. Interested patient advocates completing the program will be eligible to join their state advocacy network.
The Celiac Disease Foundation is grateful for the support of the 2020 National Patient Advocacy Summit Sponsors: Amgen, Takeda, ImmunogenX, Glutenostics, and Provention Bio.
About the Celiac Disease Foundation
The Celiac Disease Foundation is the nation’s leading patient organization for celiac disease, one of the world’s most common and least diagnosed genetic autoimmune conditions. Since its founding in 1990, the Celiac Disease Foundation continues to champion many battles: federal recognition of celiac disease and labeling standards for gluten-free foods, improved diagnostic tools, widespread patient and provider education, access to mainstream gluten-free products, and the need for better treatments and a cure. For more information, please visit celiac.org.