The Crohn's And Colitis Foundation Of America

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) is The Crohn's and Colitis Foundation of America (CCFA). Founded in 1967, the CCFA funds studies, organizes educational programs, and provides support for patients with IBD, their families, and medical practitioners.

The Founders Of The CCFA

The CCFA 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" was the term 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 would form a non-profit organization dedicated to helping those with IBD. Suzanne developed the template for in-person support groups for those with Crohn's disease and ulcerative colitis, eventually disseminating the idea to local CCFA chapters across the country.

How Fundraising Dollars Are Spent

The CCFA 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. Funds are raised through various local and national events, including the popular Take Steps and Team Challenge walking and running events.

The CCFA reports that 82% of all donations received are spent on "research, education, and support." As of 2011, the CCFA spent $43.5 million on mission-critical services, allocating the funds as follows:

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

CCFA Publications

The CCFA produces several publications, including the peer-reviewed medical journal Inflammatory Bowel Diseases, which has a circulation of 2500.

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.

CCFA Digital Products

GI Buddy. One of the offerings that the CCFA 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 has 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 get charts and graphs to see where they fall in relation to other users. Participants can also suggest areas of research and the scientists involved with the program can use the suggestions to design research studies.

CCFA By The Numbers

Some of the more important statistics about are:

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

Contacting The CCFA

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