Celiac disease afflicts millions of Americans, most of whom are undiagnosed, and is second only to end-stage renal disease in perceived burden by patients and caregivers
| LOS ANGELES, Feb. 18, 2021 /PRNewswire/ -- Celiac disease afflicts millions of Americans, most of whom are undiagnosed, and is second only to end-stage renal disease in perceived burden by patients and caregivers. Despite these appalling facts, the federal government has never been a major funder of celiac disease research. As a direct consequence, celiac disease is the most prevalent autoimmune disease with no FDA-approved treatments. For the second consecutive year, the Celiac Disease Foundation will host the Patient Education & Advocacy Summit, this year on March 4, 2021, with a primary goal of training a new cadre of Celiac Disease Foundation State Advocacy Ambassadors who can, in turn, engage patients and legislators from their communities in the struggle to accelerate research for treatments and a cure. The Summit, with more than 1500 registered attendees, will be virtual to protect patients and presenters. The FY2020 as well as the FY2021 appropriations legislation for NIH included report language drafted by the Foundation urging the world’s largest biomedical research entity to devote sufficient resources to research both treatments and a cure for celiac disease. And while we have seen momentum growing at NIH regarding celiac disease research, we have yet to see an increase in research spending towards the disease. We must continue, therefore, to demand measurable and impactful results. The 2021 Summit is a crucial tool in the Foundation’s range of strategic efforts to secure adequate investments in research that will lead to improvements in the lives of those impacted by the disease. The 2021 Summit will feature leading celiac disease researchers Joseph A. Murray MD, Mayo Clinic, Edwin Liu, MD, Colorado Center for Celiac Disease, Benjamin Lebwohl, MD, Columbia Celiac Disease Center, Jocelyn Silvester, MD, PhD, Harvard Celiac Research Program, and Ritu Verma, MD, University of Chicago Celiac Disease Center. The Summit will also include presentations from researchers on the front line of developing drugs to treat celiac disease -- Francisco Leon, MD, PhD, Provention Bio, Daniel Leffler, MD, Takeda, Jennifer Sealy-Voyksner, PhD, ImmunogenX, and Kristin Neff, Anokion -- as well as presentations from Lisa Stewart, PCORI Senior Engagement Officer, Congressional representatives, and more. “We have all witnessed with awe the capacity of the NIH to effectively deploy research to resolve a public health emergency like COVID-19. We are asking that a fraction of that same energy be committed to treating and curing celiac disease,” states Marilyn G. Geller, CEO of the Celiac Disease Foundation. “We are mobilizing all our resources, including the powerful voices of our patient advocates and research community, to urge Congress and NIH to commit to tangible, substantial increases in celiac disease research funding.” The virtual 2021 Patient Education & Advocacy Summit is funded by a PCORI Engagement Award to Convene Patients with Celiac Disease to Improve Patient-Centered Outcomes Research (PCOR) and sponsored by Provention Bio, 9 Meters Biopharma, Takeda, Glutenostics, Kanyos Bio, ImmunogenX, Schär, Cabinet Health, and Labcorp. About the Celiac Disease Foundation The Celiac Disease Foundation is the nation’s leading patient advocacy organization for celiac disease. Since its founding in 1990, the Celiac Disease Foundation continues to champion many battles: federal funding for celiac disease research and labeling standards for gluten-free foods, widespread patient and provider education, access to mainstream gluten-free products, improved diagnostic tools, and accelerated development of therapeutic treatments and a cure. For more information, visit celiac.org. Contact:
SOURCE Celiac Disease Foundation |
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