What is the CCFA?
The Crohn's and Colitis Foundation was founded in 1967 to find the cause and cure for Crohn's disease and ulcerative colitis, which collectively are referred to as inflammatory bowel disease. These are chronic diseases that affect upwards of a million people, many of them children and adolescents.
What are the CCFA's goals?
The advocacy that the Crohn's and Colitis Foundation is engaged in is primarily directed at passing federal legislation. Our major effort is the first inflammatory bowel disease act, which was introduced into the US Congress last year. The passage of this bill in the House and Senate would add significant new dollars to the National Institutes of Health (NIH) to support inflammatory bowel disease research.
We also have public education programs, patient education programs and about 380 support groups around the United States, and we have a very instructive and helpful Web site.
Why is the patient advocacy important?
There are two major things that come out of patient advocacy. One is that it can move Congress in such a way that they respond by including powerful language in House and Senate bills on health issues that indicates their interest in having research advanced in the various federal institutions, such as the NIH and the Centers for Disease Control (CDC).
Secondarily, it gives people who have the disease a sense that they're doing something about it. In addition to running local advocacy chapters and running the education meetings, people feel like there's something bigger than them in which they can take part.
