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10/16/2018

The Foundation Submits Letter of Support to FDA on Developing Patient-Focused Clinical Outcome Assessments and Endpoints

On October 15, 2018, the Celiac Disease Foundation submitted a letter of support for the National Health Council’s (NHC) comments to the FDA’s Request for Information (RFI) regarding Standard Core Clinical Outcome Assessment and Endpoint Sets (CCOAES). The NHC’s letter to the FDA included the Foundation’s input from our medical advisory and scientific community. The…

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7/20/2018

Celiac Disease Foundation Signs Letter Advocating for Improved Coverage & Affordable Access to Prescription Drugs

Many patients with celiac disease have other medical conditions, such as co-occurring autoimmune disorders, requiring treatment with prescription medications. There are also several investigational treatments for celiac disease currently in the drug development pipeline that we are hopeful will be available to patients in the coming years. For these reasons, we support improved insurance coverage…

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6/25/2018

Take Action Now to Protect Nonpartisanship for Nonprofit Organizations

The Johnson Amendment, a provision in federal law that has protected nonprofits from becoming involved in partisan electioneering activities for the past 60+ years, is currently under threat of being substantially weakened or repealed. Maintaining political nonpartisanship is an essential component of all 501(c)(3) organizations. The Celiac Disease Foundation must remain separate from partisan politics…

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4/3/2018

The Celiac Disease Foundation Submits Comment to the Centers for Medicare and Medicaid Services on Proposed Rule: Short-Term, Limited Duration Insurance

On February 21, 2018, the Centers for Medicare and Medicaid Services (CMS) released a proposed rule to modify the definition of short-term, limited duration insurance to exclude it from individual health insurance coverage. Short-term, limited duration plans (STLDPs) are not required to meet Affordable Care Act (ACA) requirements, as they are currently only intended for…

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4/3/2018

The Celiac Disease Foundation Signs Community Letter in Support of Nonpartisanship

Maintaining political nonpartisanship is an essential component of all 501(c)(3) organizations, including religious congregations, charitable nonprofits, and foundations. Per the IRS tax code, in exchange for their tax-exempt status and the ability to receive tax-deductible contributions, 501(c)(3) organizations agree to not engage in “any political campaign on behalf of (or in opposition to) any candidate…

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3/23/2018

National Coalition of Autoimmune Patient Groups Meeting Encourages Collaboration Between Autoimmune Patient Organizations

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.…

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3/21/2018

Digestive Disease National Coalition Public Policy Forum Advocates for Increased Funding for the National Institutes of Health

As part of the Celiac Disease Foundation’s expanding effort to give voice to the celiac disease community in important areas of healthcare policy and federal funding for disease research, Laura Boone, Celiac Disease Foundation Development Manager and Alana Broe, Celiac Disease Foundation Legislative Analyst, attended the Digestive Disease National Coalition (DDNC) Public Policy Forum held…

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2/20/2018

National Health Council Conference Emphasizes Importance of Patient Voice in Quality Measures

In an effort to give voice to the celiac disease community in important areas of healthcare reform, on February 15, 2018, Alana Broe, the Celiac Disease Foundation’s Legislative Analyst, attended the National Health Council (NHC) Conference: Ensuring the Patient Voice in Quality. This educational program connected patients, disease advocacy organizations, and quality measuring organizations to…

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