On Friday, I joined three of the leading celiac disease researchers in the world to present to the NIH’s Autoimmune Disease Coordinating Committee (ADCC) the findings from the Celiac Disease Foundation-sponsored First SSCD Consensus Workshop: Research Opportunities in Celiac Disease 2020. The NIH ADCC facilitates coordination of autoimmune disease research across NIH institutes, federal agencies, professional societies, and patient advocacy organizations. While a closed meeting, representatives from several leading autoimmune disease patient advocacy organizations were in attendance, including the Celiac Disease Foundation Washington, DC advocacy team.
I have included a link to a recording of my presentation offered via Zoom. Unmet Need in Celiac Disease– Patients’ Views, focused on the patient perspective of celiac disease, in particular the impact of the lack of alternatives to the gluten-free diet on our patient community. Bana Jabri, MD, PhD, of the University of Chicago, spoke on Basic Research, Unmet Needs and Opportunities. Joseph Murray, MD, of The Mayo Clinic, followed with Clinical-Translational Research: Gaps and Opportunities in Prevention and Diagnosis. Ciarán Kelly, MD, of Harvard Medical School, closed with Non-dietary treatments for celiac disease: Why? Who? What? Collectively, our presentations outlined key research findings about celiac disease, including emphasizing why and how celiac disease research would advance understanding of other autoimmune diseases.
Presenting before the NIH ADCC was another critical step in our ongoing efforts to encourage the NIH to take celiac disease seriously and to fund celiac disease research at levels that will accelerate the search for treatments and a cure.
As always, I thank you for your support of our efforts. If you have any questions, please reach out to me at firstname.lastname@example.org or at 818.716.1513, x102.
Wishing you good health,
Marilyn G. Geller