Intestinal Failure Support
Peer mentors, advocacy groups, and specialized networks for people living with SBS and intestinal failure
Living with intestinal failure requires more than excellent medical care — it requires a dedicated ecosystem of peer mentors, advocacy groups, and specialized networks. Connecting with that community is a vital part of the journey.
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Emotional well-being Peer connection reduces isolation and offers real empathy. |
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Practical advice Tips on fluids, travel with pumps, and care systems. |
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Education & advocacy Experts, research updates, and a stronger patient voice. |
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Motivation Judgment-free space from peers balancing life and care. |
Short Bowel Syndrome Foundation
Comprehensive support, education, and national advocacy for people living with SBS.
SBSF Mental Health Group
A peer space focused on emotional well-being, coping, and lived experience with SBS and IF.
International SBS Support
Connect with patients and families across regions and time zones for shared learning and encouragement.
Emotional comfort and day-to-day practical support for pediatric patients, parents, and families.
Patient- and family-driven advocacy focused on research, clinical updates, and global SBS awareness.
Research, awareness, and family support for gastroschisis.
Research, clinician education, and advocacy for necrotizing enterocolitis.
Education and advocacy for people living with intestinal or urinary ostomies.
Home parenteral and enteral nutrition education, support, and advocacy.
Support through intestinal rehabilitation and intestinal / multivisceral transplant.
Advancing the science and practice of clinical nutrition support.
Accessible SBS overview and “The Patient’s Guide To Short Bowel Syndrome.”
Pan-disease organization supporting patients and families affected by rare diseases.
External links are provided for convenience and do not imply endorsement. Verify current information directly with each organization. Closed groups may require approval after you request access.