Beyond Celiac is propelling research for treatments beyond the gluten-free diet, and ultimately a cure for this serious genetic autoimmune disease. Located in Ambler, PA, Beyond Celiac is a national organization and the largest, most-trusted and most-relied upon patient advocacy non-profit for celiac disease education, awareness, diagnosis, and patient support.
Alice Bast - Beyond Celiac CEO
The only non-profit for celiac disease with a science department, Beyond Celiac, is a hub for the celiac disease community, connecting them to researchers and providing support and education in patient-friendly language. We provide people with celiac disease the most relevant information about the latest in the field and encourage participation in research through our Go Beyond Celiac patient-centered platform and registry.
In 2003, Alice Bast founded Beyond Celiac, then called the National Foundation for Celiac Awareness. Because of her own devastating personal struggle caused by many years of misdiagnosis, Alice was compelled to use innovative approaches to address the critical needs in celiac disease: Faster diagnosis, greater awareness in the general public and with healthcare providers, and greater access to gluten-free food – the only available treatment for celiac disease thus far. Today, because of the work of Beyond Celiac, awareness of the disease is increasing, the diagnosis rate has increased 6-fold, and clearly labeled gluten-free foods are readily available nationwide.
In addition to raising awareness and driving diagnosis, Beyond Celiac is advancing research and accelerating the discovery of new treatments beyond the gluten-free diet, and ultimately, a cure.
Philadelphia Award Ceremony: Alice Bast with Ed Snider, 2011
World-renowned opera singers Placido Domingo and celiac disease patient and Beyond Celiac celebrity spokesman Arturo Chacon-Cruz
Now, Beyond Celiac continues to identify key ways to represent patients and improve their lives. We’ve refined our mission. In addition to raising awareness and driving diagnosis, Beyond Celiac is advancing research and accelerating the discovery of new treatments beyond the gluten-free diet, and ultimately, a cure. Through our patient registry Go Beyond Celiac™, we collect celiac disease stories and information from our community and gather vital data that researchers need for critical clinical research.
For years, doctors thought that the gluten-free diet was enough. But research has shown that many people with celiac disease still remain sick even on the gluten-free diet, which itself is burdensome and reduces quality of life, especially when dining out, traveling and socializing. To improve the lives of people with celiac disease, numerous treatments are in the drug pipeline. And since celiac disease is the only autoimmune disease with a known trigger, researchers believe that unlocking treatments for celiac disease may lead to breakthroughs for all of autoimmunity. But successful research needs patient engagement. Beyond Celiac is uniquely situated to amplify the patient’s voice and has created the roadmap to accelerate finding a cure for celiac disease, including identifying and funding researchers to build the momentum.
Beyond Celiac has cultivated understanding and trust with our patient community and other key stakeholders. We are working to advance science on the verge of key discoveries by recruiting the right people, focused on the right issues, provided with the right resources. We want new treatments and a cure and won’t stop until those goals are achieved.
2018 Beyond Celiac Research Symposium. Pictured: Beyond Celiac CSO Marie Robert, MD; Ciaran Kelly, MD; Maureen Leondard, MD, MMSc; Steven D. Miller, PhD
Participants at Step Beyond Celiac, an annual event to support celiac disease research
2018 Beyond Celiac Research Symposium graphic recording highlighting the evening's proceedings.