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Celiac.com 05/20/2016 - The Celiac Disease Foundation (CDF) has received an award from the Patient-Centered Outcomes Research Institute (PCORI). The PCORI Eugene Washington Engagement Award will help the CDF to create a national network of advocates trained in patient-centered outcomes research (PCOR), known as the Patient Engagement Celiac Disease Network (PECDN). The project is aimed at patients and caregivers who may be eager to participate in research, but who may feel unprepared to work with researchers, as researcher expectations and terminology can be confusing. Through this network, CDF will train patients and caregivers to become more involved in research in ways that will impact the treatment of their disease. The first training program for patients and caregivers will be offered at Celiac Disease Foundation's National Conference April 30, 2016. Read more at: Bezinga.com
Celiac.com 10/22/2014 - For my Girl Scout Gold Award I created a poster, pamphlet, and informational sheets as one part of my project. The poster covers definitions, symptoms, statistics, and links for further information. The pamphlet was created with the title of “Is Eating Gluten-Free Right for Me?” (See Download Link Below). The different parts of the pamphlet include “Having Celiac”, “Having a Gluten Sensitivity”, “Misconceptions about the Gluten Free Diet”, “Being Tested for Celiac”, and “About the Author”. The informational sheets were based off of personal experience and were designed to help people who were already on the diet and looking for help. They were titled “Going to a Party”, “Going out to Dinner”, “Cross Contamination”, and “Hidden Gluten”. The next part of my project was to share my materials with the public. I contacted many health food stores in order to have a table in front of the store where I could set up my information. I also contacted local libraries. I set up my display at my local library for the month of August. I would go to the library on occasion and stand with the display to talk about my project and answer any questions. I also brought my project to a library in the town next to mine. I contacted different health food stores, pharmacies, and doctor’s offices to put my pamphlet in. I was able to put a good number of pamphlets in these locations. To reach out to people who have celiac, I went to two celiac support group meetings and a walk for celiac disease. While at the support group meetings I explained my project, gave out gluten free food samples, and handed out the materials I created. At the walk, I had a table set up where I told people about my project and handed out my materials.