National Celiac Disease Patient Advocacy Summit in Washington, DC
The Celiac Disease Foundation is pleased to announce the National Celiac Disease Patient Advocacy Summit on February 27th, 2020 in Washington, DC.
We have met with representatives from Congress, NIH, and the FDA, and they have told us what we need to do in order to accomplish our advocacy goals for celiac disease. Our next step requires your help. On February 27th, a group of celiac patients and caregivers from all 50 states will convene in Washington, DC to hear from researchers, federal government representatives, and celiac advocates for a National Patient Advocacy Summit to learn how to become Celiac Disease Foundation State Advocacy Ambassadors. State Advocacy Ambassadors will be provided with the tools, resources and training to return to their home states as effective advocates for celiac disease.
Why Advocacy Matters
The federal government is the biggest provider of medical research funding, but up until recently federal funding for celiac disease has been nonexistent. Due to CEO Marilyn G. Geller’s testimony before the House Appropriations Subcommittee in April of 2019, Congress has directed the NIH for FY2020 to devote sufficient, focused research to the study of celiac disease. But this doesn’t mean our work in DC is done. Congress will need to renew this request of the NIH every year. Our other, equally important advocacy goals include committing the Centers for Medicare and Medicaid Services (CMS) to cover dietitian visits for celiac patients, securing improved FDA gluten-free labeling, and implementing 504 regulations in schools nationwide.
What you learn at the Patient Advocacy Summit will empower you to contact your Congressional representatives at home to persuade them to support celiac disease as a national priority. This is a pivotal moment for celiac disease advocacy- and we need to do everything in our power to keep this momentum going. As constituents, you have more power than you realize. Your senators and representatives are your mouthpiece. They are elected to represent the needs of their communities- so make them listen. We are asking you to be our boots on the ground- because we need educated patient advocates in order to improve the lives of everyone with celiac disease. We need to make sure your members of Congress hear our message from the people most important to them- those whom they are paid to represent.
Your Experience at the CDF National Celiac Disease Patient Advocacy Summit
On February 27th at the Patient Advocacy Summit in Washington, DC, you will hear from experts on the latest research being conducted on celiac disease, government representatives working on celiac disease advocacy initiatives, and a panel of patient advocates who will share their experiences as Celiac Disease Foundation Advocacy Ambassadors. We will then provide you with professional training to ensure you understand how congressional meetings work and to prepare you to talk to members of Congress, so that you can return to your home state ready to advocate for the celiac disease community as a Celiac Disease Foundation State Advocacy Ambassador. Anyone who is passionate about making a difference for the celiac disease community is invited to apply for this event. Since space is limited, we encourage you to apply as soon as possible. We invite all celiac patients, ages 12 and up, caregivers, and advocates to complete a short survey to help us determine the accommodation of participants.
Apply to Attend
Applications for the 2020 National Celiac Disease Patient Advocacy Summit are now closed. Applications for the 2021 National Celiac Disease Patient Advocacy Summit will open in November 2020.
Support or Sponsor the National Patient Advocacy Summit
If you cannot join us for the Patient Advocacy Summit, but would still like to support our advocacy efforts, you can make a donation here.