IBD Resources Hub
Menu

Showing resources for the United States. Somewhere else? Choose your country:

IBD and Crohn’s & Colitis Resources for the United States

Inflammatory bowel disease (IBD) affects close to 1 in 100 Americans: an estimated 2.4 million people, including more than 100,000 children and adolescents.

  • 1 in 100 close to this share of Americans (2023 estimate)
  • 2.4 million people living with IBD (2023 estimate)
  • 100,000+ children and adolescents (2024 estimate)

Need to talk to someone? Call the Crohn’s & Colitis Foundation’s IBD Help Center on 888-694-8872 (option 8). You can leave a message at any time, and the Help Center page lists its email and live chat hours. It gives information, not medical care: if you need medical advice outside your doctor’s office hours, call their after-hours line. In an emergency, call 911. If you feel very unwell, see when to get urgent help. If you’re struggling to cope, call or text 988 at any time, or see other free crisis lines.

IBD in the United States

IBD affects close to 1 in 100 Americans. A CDC-funded study led by the Crohn’s & Colitis Foundation (the INPUT study) found IBD diagnosed in more than 0.7% of the US population (about 721 per 100,000 people), corresponding to an estimated 2.4 million Americans, including more than 100,000 children and adolescents.

Back to contents

Getting care in the US

Where to start. If you think you might have IBD, start with a primary care provider, who can refer you to a gastroenterologist (a specialist in the gut and digestive system). If your child might have IBD, ask your doctor for a referral to a pediatric gastroenterologist (a children’s gut specialist), as GIKids advises; see also resources for children and teens. Check whether your insurance plan needs a referral before you see a gastroenterologist. Some tests, procedures, and medicines also need your plan’s approval first (prior authorization).

Paying for care. Most people are covered through an employer plan, Medicare (age 65 and over, or with some disabilities), Medicaid or CHIP (lower incomes, and children), or a plan from the Health Insurance Marketplace. If you have Medicare Part D, your out-of-pocket spending on prescriptions covered by Part D is capped each year ($2,100 in 2026); other medical costs follow different rules. Insurance rules and copays can affect which treatment you get and when. The Crohn’s & Colitis Foundation’s Managing the Cost of IBD pages explain health insurance and list financial assistance programs, and its IBD Help Center (888-694-8872, option 8) can help you understand your coverage.

Work and money. If you are eligible, the Family and Medical Leave Act (FMLA) gives you up to 12 weeks of unpaid, job-protected leave, and the Americans with Disabilities Act (ADA) may entitle you to reasonable accommodations at work (changes that help you do your job). The Crohn’s & Colitis Foundation’s employee and employer resources explain both. If you have worked long enough and can’t work because of a condition that is expected to last at least a year, Social Security Disability Insurance (SSDI) may help. If you have little or no income or resources, Supplemental Security Income (SSI) may help, whether or not you have worked.

Family and caregivers. If you’re supporting someone with IBD, see help for family and caregivers, including peer support for caregivers.

Back to contents

National Organizations

Crohn’s & Colitis Foundation

National organization with local chapters across the US Based in New York, United States

  • Charity
  • Patient Advocacy
  • Health Consumer Organisation
  • Support Programs
  • Educational Resources
  • Research Funding
The Crohn’s & Colitis Foundation is a nonprofit, founded in 1967, that funds research toward cures for Crohn’s disease and ulcerative colitis and helps children and adults live better with them. It has invested more than $500 million in research, and runs education programs and support services for patients and the professionals who treat them. Its IBD Help Center answers questions on 888-694-8872 (option 8). Learn more about the Crohn’s & Colitis Foundation

Financial transparency: Over 80 cents of every dollar goes to research, education, and patient support services (FY2024)

Color of Gastrointestinal Illnesses (COGI)

National organization for people of color living with IBD Based in Glenarden, MD, United States

  • Charity
  • Patient Advocacy
  • Support Network
  • Peer Support
  • Educational Resources
COGI works to improve life for Black, Indigenous, and people of color (BIPOC) living with IBD and other digestive conditions, through community, research, education, and advocacy. Founded in 2019 as Color of Crohn’s and Chronic Illness (COCCI), it offers free membership for patients and care partners, Facebook support groups, a newsletter, educational events, and a podcast. Learn more about COGI

Financial transparency: 67% of expenses on program services (FY2023)

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Federal research agency Based in United States

  • Government Body
  • Medical Research Organisation
  • Research Funding
  • Educational Resources
  • Clinical Trials
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the US National Institutes of Health (NIH), conducts and supports research on many common long-term conditions, including inflammatory bowel disease. It provides evidence-based health information, funds research, and supports clinical trials related to Crohn’s disease and ulcerative colitis. Learn more about NIDDK’s digestive health information

Back to contents

Ostomy and Pouch Support

Some people with IBD have surgery that leaves them with an ostomy (an opening on the abdomen, with a pouch to collect waste) or an internal pouch made from the small bowel (a J-pouch). This organization supports people living with one.

United Ostomy Associations of America (UOAA)

National organization with more than 260 affiliated support groups Based in United States

  • Charity
  • Patient Advocacy
  • Patient Support Group
  • Peer Support
  • Educational Resources
UOAA supports people who have had, or will have, ostomy or continent diversion surgery (an internal pouch instead of a bag), including a J-pouch. Its Support Group Finder lists more than 260 affiliated groups across the US, and its website has information on living with an ostomy, with sections on Crohn’s disease, ulcerative colitis, and J-pouches. It also runs a virtual ostomy clinic. Call 800-826-0826, Monday through Friday, 9 a.m. to 3 p.m. Eastern (until 2 p.m. on Wednesdays). Learn more about UOAA

Financial transparency: 78% of expenses on program services (FY2025)

Back to contents

For Children and Teens (US and Canada)

Resources for children and teens with IBD and their parents. For school in the US, the Crohn’s & Colitis Foundation explains school accommodations, such as a 504 plan (a written plan of the support your child’s school will give), and how to ask for them. In Canada, Crohn’s and Colitis Canada’s guide for teachers covers practical matters such as washroom access and missed school.

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)

Professional organization serving US, Canada, and Mexico Based in North America

  • Health Professional Body
  • Medical Research Organisation
  • Clinical Guidelines
  • Educational Resources
  • Research Programs
NASPGHAN (the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition) works to improve care for infants, children, and adolescents with digestive disorders, including IBD. It develops clinical practice guidelines, supports research, and produces educational resources for the health care professionals and families looking after children across North America. Its family website, GIKids, explains IBD in children for parents and young people.

ImproveCareNow

Network of children’s IBD care centers, mostly in the US; its family resources are free to use anywhere Based in North America

  • Patient Support Group
  • Medical Research Organisation
  • Support Programs
  • Educational Resources
  • Research Programs
ImproveCareNow is a network of pediatric IBD care centers, patients, and families working together to improve health and care for children and adolescents with Crohn’s disease and ulcerative colitis. Since it began in 2007, it has increased the number of children in remission. Its Patients & Families section offers tools for living with IBD, and patient and parent advisory councils help shape its work. Read about ImproveCareNow’s purpose and results

Financial transparency: 90% of expenses on program services (FY2025)

Back to contents

Online Communities

These are peer support communities: members share their own experiences and support each other. What you read there isn’t medical advice, so check anything about your own treatment with your doctor or IBD team.

Crohn’s & Colitis Foundation: Community & Support

Official patient community and peer support from the US national charity Based in United States

  • Patient Support Group
  • Health Consumer Organisation
  • Peer Support
  • Support Group Finder
The Crohn’s & Colitis Foundation connects patients, families, and caregivers through local and online support groups and its Power of Two program, which pairs people who are newly diagnosed or facing treatment decisions with trained volunteers who live with IBD for one-on-one peer mentoring.

Back to contents

For Health Professionals and Researchers

These organizations work mainly with doctors, nurses, dietitians, and researchers. They are listed for completeness; if you live with IBD, the organizations above are usually the better place to start.

Show list (1): For Health Professionals and ResearchersHide list: For Health Professionals and Researchers

American Gastroenterological Association (AGA)

National professional organization for gastroenterologists Based in Bethesda, United States

  • Health Professional Body
  • Medical Research Organisation
  • Clinical Guidelines
  • Patient Resources
  • Research Programs
For patients and families, the American Gastroenterological Association (AGA) runs an IBD Resource Center on its patient website, with plain-language information on Crohn’s disease and ulcerative colitis. The AGA itself is the professional body for gastroenterology in the US: founded in 1897, it has more than 16,000 members worldwide and publishes medical journals and clinical guidelines. Learn more about AGA