Amplifying Your Voices. Accelerating Research.
The above graphic was drawn at the Research Summit based on the conversation at the meeing.
People living with celiac disease need an advocate on their side. That’s what Beyond Celiac is here to do.
We’re working hard to have the biggest impact possible in the field of celiac disease so you can live your life to the fullest and eat without fear. To do that, Beyond Celiac has been talking and listening to the community through social media and one-on-one conversations to learn what needs you and your family have that remain unmet. At the same time, we work with researchers to understand what information they need to work on major problems that people with celiac disease still face.
Some of these needs include:
- An increase in celiac disease diagnoses
- A decrease in the amount of time it takes to get a diagnosis
- Better tools to diagnose and manage celiac disease
- General awareness of celiac disease as a genetic autoimmune disease
- More awareness and education in the doctor and scientist communities
- Better understanding of the patient’s journey before, during and after diagnosis
- More support, funding and attention from government agencies
- Treatment options beyond the gluten-free diet
To better understand how, together, we can help solve these problems, Beyond Celiac held formal meetings in 2013 and 2014 with experts in celiac disease and other autoimmune diseases. We determined one of the most pressing needs: researchers do not have the information they need from patients in order to help you truly live better, longer.
Beyond Celiac can solve this problem with your help by building an online tool to collect information about your experiences before, during and after diagnosis over a long-term period. We need to collect as much data as frequently as possible so that researchers have an up-to-date understanding of what life is truly like with celiac disease. By gathering this information, we can share it directly with researchers so they can keep you at the center of their work. Some doctors and researchers may call this type of tool an online patient community and patient registry.
To kick off this process, Beyond Celiac hosted its first ever Research Summit on April 16-17, 2015. This ground-breaking meeting brought together many different people from different walks of life to hash out the issues that need to be resolved for people living with celiac disease. These people included:
- People personally affected by celiac disease
- The biopharmaceutical and diagnostic (testing) industries
- Government stakeholders
- Advocates and innovators from various healthcare fields
Today, Beyond Celiac continues to work with our team of experts – including patients like you and your families – as we further develop and finalize our plans. We are here to be your partner in problem-solving. Beyond Celiac is committed to:
- Collecting your unique experiences to directly stimulate and inform research and resources that build a new future for patients
- Better identifying, understanding and treating people with celiac disease
- Connecting you to the researchers who are developing new treatment options and a cure for celiac disease
Your story is the missing piece of the celiac disease puzzle. Together, we will break down the walls between our community and scientists so we can work hand-in-hand towards a better life with celiac disease.
As always, we will keep you updated on our progress and give you more information on how you can be a part of the change.
Sign Up: Join the Beyond Celiac Research Opt-In so you can stay up-to-date on the latest in celiac disease research and opportunities to get involved.
Thank you for being part of the solution so we can all live life better, longer.