There are about three million people in the United States who have inflammatory bowel disease (IBD) — and yet, for many people, receiving a diagnosis can be an isolating experience.
Not only can the symptoms of IBD take a toll on a person’s physical health, but they can also cause some people embarrassment, which may cause them to withdraw from their family and friends. That’s where support organizations come in. The leading IBD advocacy and educational groups are dedicated to providing support and resources for people living with Crohn’s disease and ulcerative colitis (UC) throughout the country.
Whether you’re recently diagnosed or have been living with IBD for years, these organizations can give you the help you need.
Crohn’s and Colitis Foundation
Founded in 1967, the Crohn’s and Colitis Foundation is a leading IBD nonprofit organization that helps more than one million people each year through educational and advocacy programs. The organization’s webcasts, downloadable brochures, and fact sheets provide information to help those who are newly diagnosed, while professional resources — such as the scientific journals Inflammatory Bowel Diseases and Crohn’s & Colitis 360 — keep healthcare experts up to date on the latest research.
The Crohn’s and Colitis Foundation also has local chapters across the country, including more than 200 support groups, and hosts walks, fundraising galas, and Camp Oasis (a summer camp for children with IBD). Advocacy, too, is a priority, and the organization hosts special events such as a Day on the Hill and Crohn’s and Colitis Awareness Week to boost awareness and support for IBD.
Keep in touch with the Crohn’s and Colitis Foundation through:
Girls With Guts
Sisterhood is the priority of the team behind Girls With Guts, a support network for women with IBD or ostomies. The goal of the organization — which now counts 8,000 women as part of its community — is to provide support, acceptance, and empowerment to women with the disease. The organization does this through the website, live events, and annual retreats. It also offers Butt Baskets, which are care packages stocked with thoughtful items for people undergoing IBD-related surgeries or infusions.
You can follow Girls With Guts on the following social media platforms:
Connecting To Cure Crohn’s and Colitis (CtoC)
CtoC was founded in 2011 by Stacy Dylan and Dana Zatulove, who are both parents to sons who have IBD. Its goal is to connect and support the IBD community as well as to spread awareness and promote research about the disease.
CtoC connects people with IBD and family members of those with IBD to members of the community who have firsthand knowledge of the challenges and decisions, as well as hosts virtual support groups and IBD-friendly Zoom workouts. Through events — like Rock the Night 2024, which featured live entertainment and the Chip in for Crohn’s Golf Tournament — the organization also continues to raise funds to support Crohn’s and UC research.
Stay connected with CtoC on the following social media platforms:
American Gastroenterological Association (AGA)
Founded in 1897, the AGA counts more than 16,000 members worldwide. As the leading voice of the GI community, its goal is to cure digestive diseases and improve quality of life for those living with the condition. The AGA’s educational resources — which are geared toward patients, rather than doctors — provide an overview of IBD, as well as diet tips, vaccine recommendations, wellness advice, information about planning for pregnancy, doctor finder tools, and more.
To connect with AGA, follow the organization’s social media platforms:
The Great Bowel Movement
Awareness is the name of the game at The Great Bowel Movement, a nonprofit organization dedicated to raising awareness of all things IBD and ostomy. The group was founded in 2010 by two women with IBD, and has since grown into an organization that has more than 10,000 followers on its social media platforms.
The Great Bowel Movement features dozens of personal stories that highlight the resilience and fortitude of people with IBD, and invites readers to wear its “Ask Me” shirts — clothing designed to prompt a conversation about the condition.
You can join The Great Bowel Movement on:
