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CROHN'S & COLITIS FOUNDATION INC
NEW YORK, NY · EIN 136193105 · Form 990 · FY2024 · NTEE G70Z · Voluntary Health Associations · Very Large (>$50M) · crohnscolitisfoundation.org
revenue
$85.2M
expenses
$83.5M
net assets
$3.2M
employees
372
volunteers
6,005
program ratio
81%
mission · from form 990

TO CURE CROHN'S DISEASE AND ULCERATIVE COLITIS. (CONTINUED ON SCHEDULE O)

profile · synthesized from sources

The Crohn's & Colitis Foundation is a national nonprofit dedicated to finding cures for Crohn's disease and ulcerative colitis while improving quality of life for affected individuals. It provides patient education, support resources, and funds research into inflammatory bowel diseases. The organization also advocates for policy changes and supports clinical trials to advance treatment options.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $33.00M
    THE CROHN'S & COLITIS FOUNDATION PROVIDES INFORMATION AND EDUCATION FOR THE MILLIONS OF INDIVIDUALS WITH IBD AND THEIR LOVED ONES THROUGH A VARIETY OF CHANNELS AT THE NATIONAL AND LOCAL LEVEL INCLUDING IN-PERSON AND WEB-BASED EDUCATION, SUPPORT PROGRAMS INCLUDING PEDIATRIC AND ADULT FOCUS INITIATIVES, IBD HELP CENTER ANSWERING QUESTIONS AND PROVDING SUPPORT FOR THOSE WITH IBD, AND NUMEROUS PRINTED MATERIALS PROVIDINGACCURATE AND UP-TO-DATE INFORMATION. IN A RECENT IMPACT STUDY, OVER 85% OF PATIENTS CONNECTED WITH THE FOUNDATION STATED THAT THE FOUNDATION HAS HAD A POSITIVE IMPACT ON THEIR IBD JOURNEY. THESE PATIENTS ALSO REPORTED BETTER SYMPTOM CONTROL THAN NON-FOUNDATION CONNECTED PATIENTS. (CONTINUED IN SCHEDULE O)THE FOUNDATION ALSO OFFERS PROFESSIONAL EDUCATION THROUGH OUR TWO SCIENTIFIC JOURNALS, INFLAMMATORY BOWEL DISEASES AND CROHN'S & COLITIS 360, AS WELL AS THROUGH HEALTH PROFESSIONAL EDUCATION PROGRAMS BOTH IN-PERSON AND WEB-BASED. IN ADDITION THE FOUNDATION HOSTS THE ANNUAL CROHN'S & COLITIS CONGRESS CONFERENCE. IN THE PAST YEAR, THE FOUNDATION LAUNCHED A PUBLIC SERVICE AWARENESS CAMPAIGN TO INCREASE FAMILIARITY OF IBD WITH THE GENERAL PUBLIC AND REDUCE THE STIGMA FOR THOSE INDIVIDUALS WITH IBD.
named programs · 6 · from sources

What they call their work

Camp Oasis
Summer camp program for children and teens with IBD, offering a supportive environment and educational resources
Clinical Trials Community
Platform connecting patients with active clinical trials to advance IBD treatment options
IBD Help Center
Resource hub providing personalized support and information to patients and caregivers navigating IBD
MyIBD Learning Programs
Virtual and in-person education programs that connect patients and caregivers with resources and support throughout their IBD journey
Take Steps
National fundraising walk event supporting the foundation’s mission and building community among participants
Team Challenge
Fitness-based fundraising program training participants for endurance events while raising money for IBD research
activities · 2 groups

What they do

  • Inflammatory Bowel Disease Research and Support 5 activities
    • Advocate for policy changes to improve patient access to care
      Conducts advocacy campaigns that have contributed to the passage of step therapy laws in 38 states and produces public service announcements to raise awareness about inflammatory bowel disease (IBD).
    • Fund and support research projects on Crohn's disease and ulcerative colitis
      Funds research initiatives including clinical trials and epidemiological studies to advance understanding and treatment of Crohn's disease and ulcerative colitis. Supported 299 research projects and contributed to findings such as the impact of intermittent fasting on disease activity and surgical resection rates.
    • Offer support services and community connections for individuals with IBD
      Operates the IBD Help Center, facilitates support networks and online communities, provides one-on-one mentoring through the Power of 2 program, and helps patients locate IBD-specialized gastroenterologists.
    • Provide educational resources for patients and caregivers
      Produces and distributes a wide range of educational materials including brochures, fact sheets, videos, webinars, and eNewsletters covering disease management, treatment options, nutrition, mental health, and healthcare maintenance for Crohn's disease and ulcerative colitis.
    • Provide guidance on treatment, nutrition, and mental health management
      Offers information and resources to help patients manage multifaceted aspects of inflammatory bowel disease, including medication, surgery, dietary changes, nutrition, and mental and emotional well-being.
  • Program Evaluation and Impact Research 1 activity
    • Measure and assess patient-reported impact of Foundation programs
      Conducts surveys to evaluate the Foundation’s impact on individuals’ IBD journeys, with 85% of respondents reporting a positive effect.
financials · form 990 · fy2024
revenue
Total revenue$85.18M
Contributions & grants$73.89M87%
Program service revenue$9.11M11%
Investment income$1.33M2%
Other revenue$854K
expenses
Total expenses$83.50M
Program expenses81%
Admin / overhead11%
Fundraising7%
Salaries & benefits$39.22M
Grants paid out$23.68M
Largest expense lineCompensation
balance sheet
Total assets$50.65M
Cash$11.09M
Investments$1.21M
Liabilities$47.42M
Net assets$3.23M
Liquid reserves1.8 mo
3 years on record · 2020–2024 · YoY revenue +4.2%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 13
NameTitleHours/wkCompensation
MICHAEL OSSO PRESIDENT/CEO(NON-VOTING) 35 $762K
ALAN MOSS CHIEF SCIENTIFIC OFFICER 35 $464K
ROHIT SURI CHIEF TECHNOLOGY OFFICER 35 $383K
SHARON LUNGRIN CHIEF OP. OFF./CHIEF FIN. 35 $338K
MARISA MAYER CHIEF LEGAL OFFICER 35 $336K
ALLISON COFFEY CHIEF DEVELOPMENT OFFICER 35 $296K
CHRISTY DESANTIS CHIEF MKTNG. & COMM. OFFCR. 35 $284K
ANGELA DOBES VICE PRESIDENT, IBD PLEXUS 35 $277K
LAURA WINGATE CHIEF EDU. SUPP. & ADVOC. OFFICER 35 $263K
LEANA PATEL VP, PEOPLE & CULTURE 35 $229K
SARAH WEAVER VP, CLINICAL QUALITY & INNOVATION 35 $223K
JACK MATARASSO SVP, DIGITAL MARKETING 35 $219K
CHRIS FIDYK EVP, BUSINESS DEVELOPMENT 35 $218K
board members · 12
  • ALEX FUNDERBURG — TRUSTEE (THRU 03/2024)
  • AMBER BACKHAUS — CHAIRMAN (AS OF 03/2024)
  • ANDREW STERN — TRUSTEE (AS OF 03/2024)
  • ANNETTE MARTINEZ — TRUSTEE
  • ARMIN RAHMANIAN — TRUSTEE
  • AUDRA MILLER — TRUSTEE
  • BECKY FLAHERTY — TRUSTEE (AS OF 03/2024)
  • BRENT POLK MD — CHAIRMAN (THRU 03/2024)
  • CHASE CARPENTER — TRUSTEE
  • CHERYL GUERIN — TRUSTEE
  • DANIEL STONE — TREASURER
  • DAVID RUBIN MD — TRUSTEE
relationships · 9

Who they work with

  • 988 Lifeline Partner — Collaborates to provide mental health crisis support for individuals with Crohn's disease and ulcerative colitis.
  • Clinical Trials Community Partner — Collaborates to inform patients about clinical trial opportunities for IBD treatment.
  • Clinical Trials Community Partner — Collaborates to provide information and access to clinical trials for IBD patients.
  • FCB Health Partner — Provides generous support for the Foundation’s Spill Your Guts campaign.
  • Genentech, Inc. Partner — Provides financial support for the Pain and Fatigue Initiative.
  • IBD Help Center Partner — Provides direct support to patients with IBD through a dedicated help center.
  • Irwin M. and Suzanne R. Rosenthal Partner — Funded the IBD Resource Center, also known as the IBD Help Center.
  • National Health Council Partner — Collaborates through shared leadership, with the Foundation's President and CEO chairing its Board of Directors in 2026.
  • Sponsors Partner — Provides sponsorship support for the organization's initiatives.
strategies · 5

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Integrated Care Model for IBD
    methodology: integrated_care_model
    By combining medical treatment, dietary management, mental health support, and complementary therapies within a single coordinated framework, the organization improves patient outcomes because addressing IBD holistically reduces symptom burden and enhances adherence through personalized, whole-person care.
  • Patient Education and Empowerment
    methodology: patient_education_and_empowerment
    By providing accessible education about IBD, symptom management, and physician collaboration, the organization increases patient engagement and self-efficacy because informed patients are better equipped to navigate care decisions and maintain long-term health.
  • Patient Education and Peer Empowerment
    methodology: patient_education_and_empowerment
    By providing education, facilitating peer support, and promoting partnerships with physicians, the foundation increases patient engagement and self-management because informed and socially supported patients are more likely to adhere to treatment and navigate their IBD journey effectively.
  • Peer Support Networks
    methodology: peer_support_networks
    By connecting patients with trained peer mentors and local support groups, the organization improves coping and treatment engagement because shared lived experience reduces isolation and increases trust in disease management strategies.
  • Personalized Journey Navigation
    methodology: personalized_journey_model
    By offering self-directed, stage-specific resources tailored to where individuals are in their IBD journey, the organization increases relevance and utilization of support services because timing and personal context determine engagement readiness.