Leading IBD Charities & Organizations

Advocacy Groups for Those With Crohn's Disease & Ulcerative Colitis

A diagnosis of inflammatory bowel disease (IBD) brings a series of questions and challenges. And many patients reach out for support in understanding their disease and connecting with other patients. For those living with Crohn’s disease and ulcerative colitis, there are several charities and nonprofit organizations that offer a variety of services to aid in navigating life with IBD.

Such groups offer everything from in-person support, to phone help lines, to help with medical costs and disability questions. Connecting with a local support organization for IBD and receiving the information and assistance offered is an important part of the patient journey and one that can help mitigate some of the challenges of IBD. Below, find patient support groups located in the United States, Canada, and Europe that have dedicated their resources to helping patients.

Crohn’s & Colitis Foundation

The Crohn’s & Colitis Foundation (also known as the Foundation) is the largest not-for-profit group dedicated to serving people with IBD in the United States. Founded originally in 1967 as The National Foundation for Ileitis and Colitis, the Foundation is supported through donations from both supporters and industry. The Crohn’s & Colitis Foundation has an extensive network, including Take Steps and spin4 Crohn’s & colitis.

People with IBD can take advantage of not only the support groups offered locally, but also:

Crohn’s and Colitis Canada

Crohn’s and Colitis Canada was founded in 1974 by a group of 20 patients and caregivers touched by IBD. The foundation offers a wide variety of support services to those with IBD who live in Canada, which is actually one of the countries most affected by the diseases.

From humble beginnings in a rec room full of people who were concerned that there were no educational resources or research initiatives supporting those with IBD or a cure, it has grown to a nationwide resource with 45 local chapters. To date, it has raised $100 million.

Crohn’s and Colitis Canada supports several research initiatives which include not only the development of new treatments, but also that which is focused on improving the quality of life for those with IBD. One research focus is The GEM Project, which seeks to understand the causes of IBD by studying those who are at risk of developing a form of the disease.

People with IBD can get involved with Crohn’s and Colitis Canada through their many programs which include:

  • Gutsy Walk, a fundraising walk that also helps patients get fit
  • Camp Got2Go (two locations in Canada)
  • The IBD scholarship program which offers 10 individual one-time scholarship awards of up to $5,000 to students with IBD who are receiving a post-secondary education
  • The Gutsy Learning Series which offers several videos that people with IBD can use to learn more about their disease

Crohn's & Colitis UK

Crohn's & Colitis UK is a charity based in the United Kingdom that offers support and information for those living with IBD. In addition, it supports and funds research that seeks to "improve the lives of people of all ages with Crohn’s disease or ulcerative colitis.”

Founded in 1979, Crohn’s & Colitis UK has programs like In the UK and Family Network that provide fun events and guides for parents of kids with IBD who have special concerns, such as navigating the school system with a chronic illness.

Other benefits that Crohn’s & Colitis UK offers include:

  • Grants Scheme in which patients and caregivers can connect with a peer to provide educational vouchers and funds for day-to-day needs
  • Disability benefits of which people with IBD in the UK may qualify for and can better navigate with Crohn's & Colitis UK's help
  • The Patient Education Programme which offers in-person events for patients to learn more about their disease
  • Walk It! events across the UK which offer a chance for patients to fundraise for Crohn's & Colitis UK as well as meet other patients and caregivers

Crohn's & Colitis Australia

Crohn's & Colitis Australia (CCA) is a non-profit organization dedicated to “making life more livable” for people living with IBD in Australia. The CCA was founded more than 30 years ago and was previously known as the Australian Crohn’s and Colitis Association.

The CCA does participate in research studies and offers postgraduate research scholarships, but their primary purpose is to support IBD patients. Funding sources for their programs include donations and community fundraising.

People impacted by IBD can become members and receive Inside Insight, the CCA magazine, a “Can’t Wait” card, and access to a members-only section of the web site. Some of the programs and services that Crohn's & Colitis Australia offers include:

  • In-person support groups across Australia that are open to people whose lives are impacted by IBD
  • Pop-Up Parties for fundraising to support the IBD community
  • The IBD Helpline (1-800-138-029) which provides emotional support and referrals over the phone
  • Changing Lives Challenge in which participants can run, swim, or bike ride to raise funds that support CCA programs

Connecting to Cure Crohn's and Colitis

Connecting to Cure Crohn's and Colitis (C to C) is a grassroots nonprofit organization created to support patients with IBD. Founded by Stacy Dylan, the mother of a child living with Crohn’s disease, and Dana Zatulove, the mother of a child living with ulcerative colitis, the group is committed to funding research focused on understanding the causes of IBD as well as prevention for those at high risk of developing IBD.

C to C raises funds through donations, an annual gala, Rock the Night to Cure Crohn’s and Colitis, Chip in for Crohn’s golf tournaments, and children’s piano recitals. They also partner with Cedars-Sinai Medical Center in Los Angeles to offer in-person support groups to those affected by IBD, including patients, caregivers, children, and families.

Girls With Guts

Girls With Guts (GWG) is a nonprofit organization founded by Jackie Zimmerman after the positive response to an informal weekend of connecting in-person with other women with IBD demonstrated a need for a women’s support network. The Girls With Guts Retreats are the annual weekend get-togethers that help women with IBD create stronger friendships and learn how to live better with their disease.

GWG raises funds through direct donations and events, such as a global 5k. They also provide the IBD community with a private Facebook group for women impacted by IBD, informational videos, and a snail-mail pen-pal program.

ImproveCareNow

ImproveCareNow is a nonprofit group that has created a network of patients, families, caregivers, and healthcare professionals to enhance the care received by children living with Crohn’s disease and ulcerative colitis. They support research that is designed and carried out to include patients and families impacted by IBD.

Benefits offered to the IBD patient community by ImproveCareNow include tools for living with IBD, such as self-management handbooks, doctor visit planners, and the ImproveCareNow Exchange, a secure virtual area where participants can share information. ImproveCareNow community conferences are also held each year in the spring and the fall. The organization raises funds through direct donations and collaborations with industry and community partners.

A Word From Verywell

Navigating a diagnosis of IBD is a difficult prospect which is why patients shouldn't go it alone. Physicians and other caregivers can be valuable resources, but people living with Crohn's disease and ulcerative colitis will need more support in their disease journey.

This is why several patient-focused support groups have formed primarily in areas where IBD is more prevalent, such as the United States, Canada, and Europe. People with IBD should take advantage of the offerings these IBD support groups provide in order to live their best life possible.

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