Our Impact
The Crohn’s & Colitis Foundation has been at the forefront of inflammatory bowel disease research and care for more than 50 years and counting. We invest in IBD research, education, support, and advocacy initiatives.
We won’t stop until we achieve our vision — a future free from Crohn’s disease and ulcerative colitis.
Striving to Find a Cure for Crohn’s Disease and Ulcerative Colitis
The Foundation is one of the largest sources of funding for IBD research. We have invested more than $350 million into finding the causes, treatments, and cures for Crohn’s disease and ulcerative colitis.
We have played a role in every major IBD research breakthrough, including:
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The importance of TNF-alpha and its role in IBD. Antibodies to this immune system chemical led to a number of groundbreaking biologic therapies, including infliximab (Remicade) and adalimumab (Humira)
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The discovery of NOD2, the first gene identified as relevant for Crohn’s disease
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The discovery of the link between IL-23 and IBD, which led to the discovery and approval of ustekinumab (Stelara)
Accelerating the Pace of IBD Research
We are breaking down the traditional barriers to patients, data, funding, and collaborations to accelerate research and get results faster.
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IBD Plexus®: We are cutting years off the research process through this unique database. Our research partners—both in academia and at pharmaceutical companies—can dramatically accelerate their work by taking advantage of the biosamples and extensive data we have collected from thousands of patients all across the country. IBD Plexus will grow to be the single largest IBD database in the world.
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IBD Ventures: We are investing in innovative products now in development by biotech companies and academics to significantly accelerate the pace of getting new treatments, devices, and diagnostic tools to clinicians and their patients. We are the only non-profit dedicated to IBD that is focused on this important opportunity.
Leveraging Years of Major Research Investments
We’ve invested millions of dollars into foundational microbiome, genetics, and pediatric research and it’s paying off with new treatments and diagnostic tests.
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Microbiome Initiative: Our years-long investment in microbiome research has helped develop critical tools and techniques for understanding, measuring, and cataloging bacteria, viruses and fungi associated with IBD. We are now identifying live bacterial cocktails with therapeutic potential for treating IBD.
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Genetics Initiative: Years of investment in genetic research has helped identify over 240 genetic variants associated with IBD. We are now seeking a potential therapy for IBD by investing in a project to identify drugs that will modify one of these gene targets.
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Pediatric RISK Stratification Study: The Pediatric RISK Stratification study was the largest new-onset study ever completed on pediatric Crohn’s disease patients. Our $10 million investment in this study successfully identified unique biological markers that could predict aggressive complications that would require surgery over the next three to five years. We are now working to translate the learnings from this research into a diagnostic test that can be used in routine clinical care.
Catalyzing Critical Research in New Areas
We are leading the way with millions of dollars of research investment in new, critically important areas, including how environmental triggers could impact IBD.
Current studies include:
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The science behind why and how diet impacts IBD
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Deeper understanding of the connection between stress and IBD
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The possible role of viruses in the pathogenesis, susceptibility, or exacerbation of IBD, as well as in the recurrence of flare-ups
Improving Quality of Life
We are deeply committed to improving patients’ quality of life while we work toward a cure for Crohn’s disease and ulcerative colitis. Through IBD Qorus, a nationwide collaboration between patients and their healthcare providers, we are developing a quality of care standard for IBD treatment.
The practice of shared decision-making—the conversations between patients and providers about the best treatment plan—is central to this initiative. Our goals to improve patient outcomes include:
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Identifying patients at high risk for anemia to ensure they receive appropriate and timely care
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Identifying patients at risk for malnutrition or who are already malnourished in order to improve their health outcomes
Inspiring and Engaging Patients and Caregivers
We bring together the largest community of IBD patients in the country. We engage them in the fight against Crohn’s disease and ulcerative colitis through online communities and events, education programs, support services, and advocacy initiatives.
We actively solicit patient and caregiver input so that we can advance our research and educational support.
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Research: Patients are actively engaged in our research process, contributing clinical samples and data to accelerate research, and setting our research priorities. Through IBD Partners, we empower patients to share research ideas online. We embarked on a multi-million-dollar diet study based on a patient question in this crowd-sourcing platform.
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Education: Patient volunteers work with our National Scientific Advisory Committee in the creation and review of all educational content produced by the Foundation, with materials on all aspects of a patient’s IBD journey, from diagnosis onward.
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Advocacy: Patients work with us to advocate for key public policy initiatives. At the state level, we have brought together patients and physicians to actively support the passage of step therapy (fail first) reform in several states.
Empowering Patients and Caregivers, Building Resiliency
Our focus is to support patients and caregivers at every stage of their IBD journey, and empower them to take charge of their care.
The Foundation is actively expanding its patient support efforts by offering healthcare providers IBD-related professional educational resources and programs to make sure patients get the best, most complete care possible.
Our patient-support programs have also grown exponentially:
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In-person, live support programs grew by 168 percent in 2018, while online support groups grew by 109 percent. Overall, we reach more than 250,000 people each year through our support programs.
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Over 1,100 campers annually attend Camp Oasis, our summer camp for kids with Crohn’s and colitis with 12 sites across the country. Last year, almost 100 percent of the campers, parents, and staff reported that camp had a positive impact on their lives, and 60 percent called Camp Oasis “life changing.”
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We respond to approximately 12,000 patient and caregiver inquiries each year from patients and caregivers through the Suzanne M. and Irwin R. Rosenthal IBD Resource Center.
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In the last year, we’ve logged more than 24,000 visitors to our I’ll Be Determined website, 25,000 visitors to our Campus Connection website, and 42,000 visitors to our teen website.
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We educate more than 40,000 medical professionals each year, from our preceptorship and observership programs to our electronic medical record e-library to the Crohn’s & Colitis Congress, our annual research conference in partnership with American Gastroenterological Association.
Advocating for Policy Change
We are proud to continue the legacy of our co-founder, Suzanne Rosenthal, a fierce and passionate advocate. The Foundation advocates at the state and federal level to implement policy change that helps patients access the care they need, when they need it. We’ve seen incredible advocacy success, including:
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The passage of U.S. Senate Resolution 199 in 2011 designating December 1-7 as Crohn’s & Colitis Awareness Week
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The creation of the bipartisan Congressional Crohn’s and Colitis Caucus, with more than 70 members raising awareness of IBD and supporting patient-friendly legislative priorities
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Partnerships with other voluntary health organizations to protect the basic patient protections outlined in the Affordable Care Act, including pre-existing conditions and essential health benefits
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Volunteer-led efforts leading to the passage of restroom access legislation in 17 states
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Secured funding for IBD medical research at the National Institutes of Health, National Institute for Diabetes and Digestive and Kidney Diseases, Centers for Disease Control and Prevention, and the U.S. Department of Defense