How Beyond Celiac Is Forging Pathways to a Cure
Beyond Celiac is here to be an advocate for people with celiac disease. In 2019, we launched our Science Plan, which lays out the strategies we will be focusing on to accelerate research for treatments and a cure for celiac disease.
Key elements of the Beyond Celiac Science Plan include:
- Creating the patient registry, Go Beyond Celiac
- Launching an in-house science department led by a Chief Scientific Officer
- Assembling a Scientific Advisory Council
- Funding much-needed research
We’re working hard to have the biggest possible impact 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’re working 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
- 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 get this information, Beyond Celiac worked with patients and researchers to create Go Beyond Celiac, an online community for people with celiac disease. Go Beyond Celiac is a place for people with celiac disease to share their experiences with celiac disease. It’s also a place where you can connect with others who have celiac disease, learn more about the latest in celiac disease research, and ask questions of experts.
Go Beyond Celiac will capture data from people with celiac disease, including:
- Experiences before, during and after diagnosis
- Past and current symptoms
- Psychosocial and economic impacts of living with celiac disease
Sharing your story will give researchers an up-to-date understanding of what life is truly like with celiac disease. It is only with information from people with celiac disease that we accelerate research, including that of the drugs in the development pipeline, in order to find a treatment for celiac disease.
Your story is the missing piece of the celiac disease puzzle. Joining Go Beyond Celiac will help break down the walls between our community and scientists so we can work hand-in-hand towards a better life with celiac disease.
Go Beyond Celiachas been in development since 2013, when Beyond Celiac started holding formal meetings with experts in celiac disease and other autoimmune diseases. Our first-ever Research Summit in April 2015 brought together a diverse group of stakeholders, including people diagnosed with celiac disease, doctors, scientists, government officials, and people from the pharmaceutical industry. We determined one of the most pressing needs: researchers do not have the information they need from patients. We created Go Beyond Celiac to meet that need.
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
Joining Go Beyond Celiac will give you a chance to have your voice heard contribute directly to celiac disease research.