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8/5/2019

You Are Invited to the 2019 PCORI Annual Meeting

I’m writing to invite you to join me and others from across the healthcare community at the 2019 Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, being held September 18-20 at the Marriott Wardman Park Hotel in Washington, DC. As a member of PCORI’s Advisory Panel on Patient Engagement, I know firsthand that PCORI’s staff is…

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3/20/2019

Marilyn’s Message March 2019

You know better than anyone the challenges of living with celiac disease. As CEO of the Celiac Disease Foundation, I am scheduled to testify on April 9th in front of the Congressional Appropriations Subcommittee responsible for NIH funding.

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2/19/2019

Marilyn’s Message February 2019

Our vision is clear: the Celiac Disease Foundation seeks to accelerate research to identify treatments and a cure for celiac disease. Since our founding almost 30 years ago, we have known that successful fulfillment of this vision demanded that we be the voice of the celiac community in the corridors of power in and around…

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11/20/2018

Marilyn’s Message November 2018

Led by the Celiac Disease Foundation, patients have been demanding for decades that researchers, government officials, and pharmaceutical companies understand it is nearly impossible to live in the real world and maintain a "strict" gluten-free diet. Thanks to your impactful support, the Foundation has developed, and now offers to medical researchers, the tools, data, access to patients, and strategic investments to advance promising drugs through the development pipeline.

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10/22/2018

Marilyn’s Message October 2018

Celiac.org has a new look. With more than 6.5 million unique visitors annually, Celiac.org is, by far, the most visited celiac disease site in the world. This new look, created specifically for our online community of celiac disease patients and caregivers, healthcare professionals and researchers, as well as our general visitors, offers a streamlined design,…

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8/29/2018

Marilyn’s Message August 2018

I am pleased to announce that I have been selected to be on the Patient-Centered Outcomes Research Institute [PCORI] Advisory Panel on Patient Engagement. I was nominated by the Consumers United For Evidence-Based Healthcare (CUE) organization. CUE is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best…

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5/1/2018

Marilyn’s Message May 2018

In honor of Celiac Disease Awareness Month. I share my National Conference Welcome remarks: I have been the Celiac Disease Foundation for six years now. I have to say, it’s been quite a journey. I was gifted this position by Elaine Monarch, our visionary Founder. Thanks in large part to her efforts, celiac disease began…

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