Inflammatory bowel disease (IBD) is sometimes referred to as an “invisible illness.” But to those who have Crohn’s disease or ulcerative colitis, the symptoms are anything but.
That’s where support organizations come in. Many of the leading IBD advocacy and educational groups are dedicated to spreading awareness and providing education about the condition, while also helping to foster connections between people with IBD.
Whether you’re recently diagnosed or have been living with IBD for years, these organizations can give you the help you need.
Crohn’s & Colitis Foundation
Founded in 1967, the Crohn’s & 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, as well as hosts walks, fundraising galas, and a summer camp for children with IBD called Camp Oasis.
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. Information is frequently posted on their social media accounts, including Facebook and Instagram.
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.
Popular programs include the Love Your Guts Mail, which allows you to send notes to other Girls With Guts members, and the Butt Baskets care packages, which are stocked with thoughtful items for people undergoing IBD-related surgeries or infusions. You can follow Girls With Guts on the following social media, including Facebook and Vimeo.
Connecting to Cure Crohn’s and Colitis
Connecting to Cure Crohn’s and Colitis (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 their annual Rock the Night, which features 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 through Facebook and Instagram.
American Gastroenterological Association
Founded in 1897, the American Gastroenterological Association (AGA) counts more than 16,000 members worldwide. As the leading voice in the gastrointestinal community, its goal is to cure digestive diseases and improve the 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 on Facebook or Instagram.
IBD Support Foundation
The IBD Support Foundation (IBDSF) focuses on treating the mental aspect of Crohn’s or ulcerative colitis. The organization provides online psychosocial care and mental health support to people with IBD and their families, and it offers educational videos about anxiety, intimacy, and other related issues.
Along with hosting the podcast Gut Matters, the IBDSF provides mental health care training to physicians, nurse practitioners, and other healthcare providers who are treating people with IBD. To follow the organization online, visit the website or reach out via email.
