Crohn's & Colitis Foundation Inc. HQ

Uniting to Care and Cure

Mission

To find a cure for Crohn's disease and ulcerative colitis and to improve the quality of life of children and adults affected by these diseases. Crohn's disease and ulcerative colitis are collectively known as inflammatory bowel diseases (IBD).

Ruling year info

1966

President / CEO

Mr. Michael Osso

Main address

733 Third Ave Suite 510

New York, NY 10017 USA

Show more contact info

EIN

13-6193105

NTEE code info

Specifically Named Diseases (G80)

Digestive Diseases, Disorders (G70)

Other Medical Research N.E.C. (H99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Crohn’s & Colitis Foundation is dedicated to finding cures for Crohn's disease and ulcerative colitis and improving the quality of life for the estimated 1 in 100 children and adults in the U.S. affected by these diseases. Our priorities include: • Advancing new therapies and innovative products to discover more effective treatments and cures. • Improving patient remission rates • Improving patient access to treatments • Improving patients’ quality of life through support and education • Educating and partnering with health professionals • Ensuring that diverse communities have the latest IBD information and education they need for the best possible outcomes. • Ending disparities in the diagnosis and treatment of IBD patients. The Foundation’s work is guided by a strategic plan that we develop every four years with significant input from our stakeholders: our staff, volunteers, donors, partners, healthcare professionals, researchers, patients, and caregivers.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research Programs

The Crohn's & Colitis Foundation is a leading supporter and founder of medical research into inflammatory bowel disease (IBD).

In 2021, the Foundation invested $32 million in 200+ research projects, bringing the number of projects supported since our inception to more than 2,500 and our total research investment to $446 million.
We invest our dollars wisely, funding the best IBD research anywhere in the world and implementing a peer-review process that ensures that only the most promising and relevant grant applications are funded. The Foundation has played a role in every major scientific breakthrough in IBD, from generating data that led to new therapies to the discovery of the first gene for Crohn's disease.

Foundation-sponsored research has led to breakthrough discoveries in the role that genetics and the human microbiome play in IBD onset and progression, and we have established the largest IBD research and data exchange platform in the U.S. called IBD Plexus.

Population(s) Served
Adults
Children and youth

We support patients in their journey of understanding and managing their disease.
IBD Help Center: Patients speak with our specialists about managing their IBD, treatments, and coping strategies.
MYIBDLearning Education Series: More than 11,000 people/year learn about IBD through our in-person and virtual education series featuring local and national experts.
Peer-to-Peer Mentors: Patients are connected with a trained peer mentor for support.
Crohn’s & Colitis Community: Our online community provides a place to connect, and support each other.
Camp Oasis: Our residential summer camp for kids with IBD provides a safe and supportive community that has been described as life changing. Over1,500 kids attended virtually in 2021.
Support groups: Patients and caregivers share stories, seek emotional support, and get their questions answered.
Online resources: Patients learn about medication options, insurance, diet, clinical trials, and finding a provider who specialize in IBD.

Population(s) Served
Adults
Children and youth

The Crohn's & Colitis Foundation engages with healthcare providers through a wide range of education and resources to support and improve their understanding of IBD, including:

• Crohn’s & Colitis Congress®: Our premier IBD conference for professionals. More than 1,400 professionals attended in 2021.

• Advance Practice Provider (APP) Preceptorship: Participants rotate through leading IBD centers.

• IBD Clinical Hub: Our professional education microsite which saw a five-fold increase in site users since its launch in 2020.

• Professional Membership: Our Professional Membership Program that offers education and engagement through webinars and events to more than 2,100 professionals.

• Visiting IBD Fellow Program: Second- and third-year gastroenterology fellows do rotations at 14 host institutions. Participants report acquiring significant knowledge related to IBD diagnostic tools, treatments, and research.

Population(s) Served

The Foundation mobilizes volunteers and state and national stakeholders to share their stories and advocate for legislation that eliminates barriers to care.

The Crohn’s and Colitis Caucus is a bi-partisan group of Members of Congress dedicated to educating their colleagues and working together to raise awareness, support IBD medical research, and protect patient access to care.

The Foundation also engages in federal-level campaigns including efforts to sustain funding levels for IBD research in the Fiscal Year 2022 federal appropriations bill.

Legislative priorities include the Safe Step Act which aims to reduce step therapy protocols and ensure patients are able to safely and efficiently access the best treatment for them. The Medical Nutrition Equity Act would ensure that public and private insurance covers medically necessary foods for inherited metabolic disorders and digestive diseases including Crohn’s disease and ulcerative colitis.

Population(s) Served

Our community events bring patients, their families, and friends together to raise awareness for vital treatment, research, and patient programs for people living with IBD. They include:

Take Steps: Brings patients, caregivers, and community leaders together for a day of awareness, education, and support. To date, more than 441,000 people have come together through Take Steps raising $114 million for IBD research and programs.

Team Challenge: One of the premier endurance training programs in the country. As a Team, participants challenge themselves while raising awareness and funds for cures for IBD. Participants can either run or walk a 5K, 10K, half marathon or marathon; cycle; hike; or enter in a Triathlon or IRONMAN.

spin4 crohns & colitis cures: Our premier indoor cycling event where participants raise awareness and money for IBD research. In 2021, spin4 raised more than $1.29 million for IBD research and patient programs.

Population(s) Served
Adults
Adults
Children and youth
Adults
Children and youth
Adults
Children and youth

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2021

Charity Navigator 2021

Affiliations & memberships

Better Business Bureau 2021

Combined Federal Campaign 2021

Community Health Charities 2021

United Way Member Agency 2021

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Research Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Engagements with constituents through education, support, and advocacy programs.

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Patient Education and Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

For 2020, launch of timely COVID-19 resources led to additional engagements.

Number of votes for or against specific policies

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Number of states with Step Therapy Reform laws that the Foundation supported.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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%.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve more than 1.2 million patients annually, empowering patients and caregivers through our chapters, and our education, support, and advocacy programs.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    For years, the Foundation has provided our members with a physical “I Can’t Wait” card to help explain to businesses why they are urgently requesting access to a private restroom. Now, the “We Can’t Wait” app offers patients – and all app users – a simple way to locate publicly accessible restrooms and helps identify sympathetic establishments. The Foundation has worked with volunteers in many states over the years to introduce legislation that will require public access to employee-only restrooms for those with a medical need. Now, this app will address the access challenge by increasing awareness among local establishments about patient needs.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    The Crohn's & Colitis Foundation is guided by a strategic plan that we develop every four years with significant input from our stakeholders: our staff, volunteers, donors, partners, healthcare professionals, researchers, patients, and caregivers. We view the strategic planning process as a very serious responsibility, ensuring that our resources, expertise, and leadership role within the IBD Community are strategically focused on our diverse community's most urgent needs.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, Staff find it hard to prioritize feedback collection and review due to lack of time, It is hard to come up with good questions to ask people,

Financials

Crohn's & Colitis Foundation Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Crohn's & Colitis Foundation Inc.

Board of directors
as of 05/27/2022
SOURCE: Self-reported by organization
Board chair

Brent Polk, MD

Amber Bakhaus

Noel Brown

Brent Polk, MD

Alessandro DiNello

Alex Funderburg

Michele Kissous-Hunt, APP

Joseph Monk

Frank Russomano

Jodi Yellen

Ander Crenshaw

David Rubin, MD

Peter Higgins, MD

Nina Bewtra, MD

Rhonda Bolding

Chase Carpenter

Deb Crawford

Tolu Falaiye, MD

Sean Kelley

Annette Martinez

Audra Miller

Jeff Mittleman

Lori Rabinowitz

Armin Rahmanian

Joel Rosh, MD

Daniel Stone

Troy Vollertsen

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 5/27/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Gay, Lesbian, Bisexual, or other sexual orientations in the LGBTQIA+ community
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data

Equity strategies

Last updated: 05/27/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.