Crohn's & Colitis Foundation

An Advocacy Group For People With Inflammatory Bowel Disease

Support Group
The CCFA provides the structure for support groups for people with Crohn's disease and ulcerative colitis in locations around the country. Image © Tom Merton / Caiaimage / Getty Images

In the United States, the largest not-for-profit group offering support and information to people with inflammatory bowel disease (IBD) and their caregivers is the Crohn's and Colitis Foundation, also called the Foundation. Founded in 1967, the Crohn's & Colitis Foundation funds studies, organizes educational programs, and provides support for patients with IBD, their families, and medical practitioners who treat those who live with IBD.

The Founders Of The Crohn's & Colitis Foundation

The Foundation first came into being in 1967 as The National Foundation for Ileitis and Colitis. It was initially founded by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, MD. ("Ileitis," which is now considered an outdated term, was used because at the time, that is what was used to describe Crohn's disease.) Suzanne Rosenthal was diagnosed with Crohn's disease in 1955. She, along with her husband Irwin, the Modells, and Dr Janowitz, formed the first non-profit organization dedicated to helping those who live with IBD and their families.

Suzanne developed the template for in-person support groups for those with Crohn's disease and ulcerative colitis, eventually disseminating the idea to local Crohn's & Colitis Foundation chapters across the country. The Foundation was rebranded as the Crohn's and Colitis Foundation of America, which was then updated to Crohn's & Colitis Foundation in 2017, which included the use of a new logo and instituting a different direction for the group.

How Fundraising Dollars Are Spent

The Crohn's & Colitis Foundation receives no funding from the government, but is supported completely by its 50,000 members who belong to one of 40 chapters across the United States and by grants from industry. Funds are raised through various local and national events, including the popular Take Steps and Team Challenge walking and running events. The Foundation reports that 82% of all donations received are spent on "research, education, and support." As of 2011, the Crohn's & Colitis Foundation spent $43.5 million on mission-critical services, allocating the funds as follows:

  • Program Services: 81.8%
  • Fundraising: 8.0%
  • Administrative: 10.2%

Crohn's & Colitis Foundation Publications

The Crohn's & Colitis Foundation produces several publications, including the peer-reviewed medical journal Inflammatory Bowel Diseases, which has a circulation of 2500 health care professionals who are involved in the treatment of people who live with IBD. The two other main publications include Take Charge, which is published twice a year to a circulation of 50,000, and Under the Microscope, which is published twice a year to a circulation of 80,000.

Crohn's & Colitis Foundation Digital Products

GI Buddy. One of the offerings that the Foundation makes free for patients to use is the GI Buddy app. GI Buddy is a way for patients to track their treatments, symptoms, and meals, and generate a log and some reports. 

CCFA Partners. This online tool is used by more than 14,000 users who have a form of IBD. CCFA Partners users can input some basic information about their symptoms and well-being and in return receive charts and graphs to see where their individual situation falls in relation to other users who have taken the relevant survey. Participants can also suggest areas of research which are then voted on by other users who are also interested in seeing those ideas included in a research study. The scientists involved with the program can then use the suggestions to design research studies.

Crohn's & Colitis Foundation By The Numbers

Some of the more important statistics about the Crohn's & Colitis Foundation are:

  • Each month, the organization's web site, has 80,000 visitors and serves 400,000 page views.
  • Approximately 37% of gastroenterologists in the United States are members of the Crohn's & Colitis Foundation.
  • Of the estimated 1.6 million people in the United States with IBD, 1 in every 17 is a member of the Crohn's & Colitis Foundation.
  • In 2011, over 10,000 people attended 265 different Crohn's & Colitis Foundation support groups around the country.
  • Every year, the Crohn's & Colitis Foundation facilitates a summer camp experience for 1200 children with IBD (including those with j-pouches and ostomies) at Camp Oasis locations across the United States.

Contacting The Crohn's & Colitis Foundation

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