Support & community
Trusted organizations and communities for people living with PSC and inflammatory bowel disease — and with a liver transplant, an ostomy, or a J‑pouch. PSC-specific and liver resources come first, since they are the hardest to find; the broader IBD organizations follow.
PSC & liver
The leading U.S. patient-led PSC nonprofit — education, an annual patient-and-researcher conference, peer support, and PSC research funding.
UK charity with expert-reviewed PSC information, a patient helpline, information days, and plain-language explainers of the risk scores clinicians use.
Registered Canadian charity supporting PSC patient education, community, and research.
Patient-entered research registry run by PSC Partners — contribute your own data to PSC research, and see what is being studied.
Liver-disease education, support groups, and a national helpline covering PSC and the road to transplant.
Peer support and advocacy for transplant candidates, recipients, donors, and families — before and after transplant.
How the U.S. transplant system actually works: getting listed, how waiting time and MELD are used, and what to expect at each stage.
Foundations & nonprofits
The leading U.S. IBD nonprofit — patient education, local chapters, in-person and virtual support groups, and the IBD Help Center (1-888-694-8872).
Support, advocacy, and community for anyone living with an ostomy or pouch.
Support and advocacy for Black, Indigenous, and people of color living with IBD and chronic digestive disease. Their website is offline; this is the organization's active channel.
Peer community building confidence and connection for women living with IBD and ostomies.
Online communities
Patient-run online community and forum for candid, day-to-day IBD support.
Patient-run forums for people with, or considering, a J-pouch (IPAA) — general discussion, pouchitis, diet, and peer support.
Support groups & meetups
Monthly virtual peer-support group, first Thursday at 7 p.m. ET. Email ccjpouch@myibdsupport.org to join.
UK pouch-patient charity with stories, resources, and peer support.
Find a local ostomy or pouch support group anywhere in the U.S.
International
UK charity — information, local networks, and a confidential helpline.
Canadian IBD charity funding research and supporting patients and families.
European Federation of Crohn's & Ulcerative Colitis Associations — the umbrella of national patient organizations across Europe.
External resources are independent of the Holubar Lab; listing does not imply endorsement. Always verify with your own care team.