The Celiac Disease Foundation is committed to representing the celiac disease patient voice in policy and healthcare reform, and can better do so alongside strong allies with common goals. To this end, on March 20, 2018, Alana Broe, Legislative Analyst for the Celiac Disease Foundation, attended the National Coalition of Autoimmune Patient Groups (NCAPG) meeting. The meeting was hosted by the American Autoimmune Related Disease Association (AARDA), of which the Celiac Disease Foundation is a member. Topics of discussion included patient access to care in the wake of the Affordable Care Act, innovative care models, and patient protection in light of changes in healthcare delivery. Throughout the meeting, discussions focused on changes coming out of Congress and regulatory agencies, and on collaboration between patient groups.
The goal of AARDA is to organize the autoimmune disease advocacy organizations around common goals. It is difficult to get the attention we need to make substantive change as individual organizations, but our voices are much stronger together. Wherever we can agree on common strategies to improve awareness of autoimmune diseases and improve the quality of treatment of these diseases, we better our opportunity to have real impact. This meeting was a beneficial opportunity to strengthen the Foundation’s existing relationship with other autoimmune disease advocacy organizations as we continue to advocate for better patient treatment and management of celiac disease.
About the American Autoimmune Related Disease Organization
The American Autoimmune Related Diseases Association was founded in 1991 to focus on connections between autoimmune diseases. AARDA is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner. [1] AARDA works towards this goal through collaboration with disease-focused organizations in their National Coalition of Autoimmune Patient Groups (NCAPG). The Celiac Disease Foundation is a proud a member of NCAPG.
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National Coalition of Autoimmune Patient Groups Meeting Encourages Collaboration Between Autoimmune Patient Organizations