Skip to main content

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.

Continue Reading

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…

Continue Reading

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…

Continue Reading

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partisan electioneering activities for the past 60+ years, is currently under threat of being substantially weakened or repealed.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…

Continue Reading