Crohn's & Colitis Foundation Inc. HQ

Expanding Patient and Caregiver Engagement: Expand the active involvement of patients and caregivers in the development and execution of the Foundation’s mission strategic objectives to ensure more inclusive programming that meets patient needs.

Improving Access to Care: Improve access to timely diagnosis and management of care for patients with IBD through a variety of methods, including education, awareness, advocacy, and use of real-world data (health-related data generated directly from patients or during routine clinical care), in order to improve health outcomes.

Improving Remission Rates: Improve IBD patient remission rates through initiatives focused on the key drivers of disease diagnosis, progression, and management in order to improve the quality of life of patients living with these diseases.

Advancing New Therapies and Innovative Products: Advance new therapies and innovative products by supporting the discovery and development of those that address unmet patient needs across diverse populations, leading to improvements in patient quality of life and cures.

Supporting a Pipeline of Committed Clinicians and Researchers: Attract, support, and develop a pipeline of innovative and successful clinicians and researchers to advance the Foundation’s research priorities and educational programs.

Financial Aim to Achieve Our Mission: The Crohn’s & Colitis Foundation is working toward becoming a $100 mission organization by 2025, representing a 25% growth in revenue. This will be accomplished by expanding our reach, increasing engagement with principal supporters, pursuing high-margin opportunities, capitalizing on new trends, and exploring business concepts.

Expanding Patient & Caregiver Engagement
• Engage patients and caregivers who represent the diversity in the IBD community (i.e., race, ethnicity, age, gender, disease experiences) in all mission activities to ensure our programs respond to the needs of all patients.
• Ensure that best practices for engaging diverse patients and their caregivers are developed and used as standard practice across mission areas.
Improving Access to Care
• Develop educational awareness programs for patients, caregivers, and providers to improve access to multi-specialty providers, reduce the average time to diagnosis, and improve health outcomes and care satisfaction.
• Engage industry, payers, and governmental agencies with the use of real-world data generated through IBD Plexus® (our data platform and biobank) and other data sources, to advance discussion on the cost of care and improving access to IBD care.
• Expand our state and federal advocacy efforts and empower patients/caregivers with tools to better address insurance-coverage decisions and improve access to affordable care.
Improving Remission Rates
• Implement an evidence-based clinical approach within the growing IBD Qorus® network (our quality-of-care program) to achieve greater remission rates.
• Develop evidence-based decision guidance regarding diagnosis, disease progression, and management using data from IBD Plexus® and other sources.
• Fund—and advocate for external funding of—research that accelerates understanding of the biological mechanisms underlying disease remission and key clinical drivers of remission, to generate findings that lead to better management strategies and higher remission rates.
Advancing New Therapies & Innovative Products
• Provide funding and resources to outside institutions to speed the development of new products that address unmet patient needs.
• Advance specific therapeutics and diagnostics that we can address through internally managed research programs that take advantage of IBD Plexus® resources.
• Advance the discovery, validation, and use of biomarkers through resources and by partnering with key stakeholders to advance precision medicine in IBD.
• Accelerate enrollment of patients into clinical trials by engaging key stakeholders, including patients and caregivers from diverse communities, to advance promising therapeutics towards regulatory approval.
• Support research that addresses unmet clinical needs across diverse populations by improving understanding of the underlying human biology, using bedside to bench approaches that can lead to new drug targets and biomarkers.
Supporting a Pipeline of Committed Clinicians & Researchers
• Support the development of future IBD researchers through the flagship training and junior investigator awards, with representation across backgrounds underrepresented in medicine.
• Continue existing and develop new programs to engage trainee clinicians and researchers in priority research and educational programs.

Leadership: The Crohn’s & Colitis Foundation has been commended by the National Institutes of Health (NIH) as the leading advocate for patients and the hub of the IBD community. We are a leader, driver, convener, and catalyst in the IBD community.

Metrics and Milestones: The Foundation has established key metrics and critical milestones for all initiatives, to clearly demonstrate success.

Collaboration: We engage and collaborate with every IBD constituency including patients, caregivers, clinicians, researchers, volunteers, donors, commercial partners, and other non-profits.

Inclusion: We create a positive culture that welcomes, respects, and values differences while seeking out opportunities to safeguard against inequalities and disparities. We actively seek out people of diverse backgrounds to inform the development of our strategies and programs.

Strong and Diverse Patient Focus: Our mission is patient-centered and we ensure that the diversity of patient experience is reflected in all of our initiatives and programs. We bring together the largest community of IBD patients in the country, and we engage them in the fight against Crohn’s & colitis. Patients are involved in:

• Setting our research priorities
• Contributing data and bio samples to accelerate research
• Helping design our educational efforts alongside our scientific advisors
• Advocating for key public policy issues to legislators

Volunteers: We have a strong base of volunteers whose skills, resources, and perspective we engage in the work of the Foundation.

To date, the Crohn’s & Colitis Foundation has played a role in every major research breakthrough in IBD. We developed a wide and comprehensive range of educational programs for patients and healthcare professionals, while providing supportive services to help people cope with these chronic diseases.

Accomplishments include:

• Funded research discovering 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).
• Supported research discovering NOD2, the first gene identified as relevant for Crohn’s disease, and launching the Genetics Initiative which has helped identify 215 genes susceptible to developing IBD.
• Established the Microbiome Initiative to study how intestinal microbiota contribute to the onset and progression of IBD. This research is helping lead the way to precision medicine for IBD.
• Launched the Pediatric RISK Stratification Study, a study of the largest group of pediatric patients in the history of Crohn’s disease from the time of diagnosis. The study has identified biomarkers that can predict disease course and severity in kids with Crohn’s at the time of diagnosis.
• Developed IBD Plexus®, the single largest IBD database in the U.S., providing researchers with access to critical data from over 26,000 patients, including 200,000 bio samples (blood, stool, and intestinal tissue).
• Developed IBD Partners, an online registry of more than 17,000 adult and pediatric IBD patients across the country. In 2021, the registry facilitated 16 active studies.
• Launched the first large-scale randomized trial in the U.S. showing that diet can significantly benefit adult patients with IBD.
• Developed a new restroom app, “We Can’t Wait,” giving patients a simple way to locate publicly accessible restrooms and identify sympathetic establishments.
• Made a positive impact on patients’ lives. Over 75% of patients connected with the Foundation stated that we had a positive impact on their IBD journey. Patients also reported better symptom control than non-Foundation connected patients. (Foundation Tracking Study, 2022)
• Grew support for step therapy legislation on both the state and federal levels. 31 states have now passed step therapy legislation.
• Launched IBD Clinical Hub, our professional education microsite containing the latest education, resources and in-person programs. Engagement increased five-fold since launched in 2020.
• Launched MyIBD Learning education series for patients, caregivers, and professionals used by 11,000 people in 2021.
• Helped kids cope with IBD – Thousands of young people (1,500 in 2021) have participated in Camp Oasis, our summer camp for kids with IBD. In surveys conducted before and after camp (2012–2019), the number of campers who were “more open about their disease with friends” increased by 56%.