Such groups offer everything from in-person support, to phone helplines, 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 unique challenges created by IBD. Below, find patient support groups located in the United States, Canada, and Europe that have dedicated their resources to helping patients.
People with IBD can take advantage of not only the support groups offered locally, but also:
A summer camp offered for kids with IBD IBD Help Center, where patients and caregivers can connect with an IBD specialist via email or phone Crohn’s & Colitis Community, an online support group where patients and caregivers can connect virtually Current research initiatives sponsored by the Foundation and their partners Advocacy initiatives that further the interests of patients and healthcare professionals in governmental institutions and provide for research funding The National Council of College Leaders (NCCL), a youth-based group which works to increase education and support for people with IBD through various advocacy and fundraising initiatives Membership to the Crohn’s & Colitis Foundation for people with IBD or anyone who is interested in helping those with IBD (for a small donation)
From humble beginnings in a rec room full of people concerned about a lack of educational resources or research initiatives supporting those with IBD or a cure, it has grown to a nationwide resource with dozens of local chapters. To date, it has raised over $100 million.
Crohn’s and Colitis Canada supports several research initiatives including the development of new treatments and methods to improve 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
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 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
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
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.
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.
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.
