Connecting Beyond the Diagnosis: Find Your SBS Support Community

While an estimated 61% of Americans turn to the internet for medical answers, raw data and clinical definitions often fall short. When navigating a rare condition like Short Bowel Syndrome (SBS), patients and caregivers are usually looking for something deeper: genuine empathy, shared lived experiences, and emotional connection. Online support networks bridge this gap. In fact, 1 in 5 internet users turn to online communities to find support for their health concerns, using these shared experiences as a vital supplement to their professional medical care.

The Short Bowel Syndrome Foundation, Inc. (SBSF) originally began as an online support initiative, actively participating in pediatric advocacy and facilitating adult SBS support groups. Because a single group isn’t always enough to cover every unique journey, we have compiled a trusted directory of additional specialized organizations, dietary alliances, and peer networks to help you stay supported, educated, and connected.

Intestinal & Nutritional Support Resources

These organizations focus heavily on clinical nutrition therapies (like Parenteral and Enteral nutrition), rare disease advocacy, and dedicated peer-to-peer support for intestinal failure.

• American Society for Parenteral and Enteral Nutrition (ASPEN) The premier organization dedicated to clinical nutrition and dietary care therapies.

• The Oley Foundation A powerful, patient-centered network providing specialized support, education, and resources for those living with home intravenous (PN) and tube feeding (EN).

• Short Bowel Support A dedicated online community and resource hub specifically built for individuals living with SBS.

• National Organization for Rare Disorders (NORD) The largest national patient advocacy network connecting individuals across thousands of rare disease communities.

Gastrointestinal Medical Organizations & Foundations

These leading associations offer deep clinical insight, research updates, pediatric specialties, and dietary guidelines to help you better understand your medical care.

• American Gastroenterological Association (AGA) The professional home for gastroenterology specialists, featuring patient education resources and scientific advancements.

• American Association for the Study of Liver Diseases (AASLD) A vital resource for understanding liver health, which is especially important for individuals managing long-term Parenteral Nutrition.

• American Society for Gastrointestinal Endoscopy (ASGE) Focused on advancing patient care and safety in gastrointestinal endoscopy and internal imaging.

• Academy of Nutrition and Dietetics (Formerly ADA) The world’s largest organization of food and nutrition professionals, offering tailored dietary and nutritional guidance.

• North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) A specialized medical organization focusing entirely on the unique gastrointestinal, liver, and nutritional needs of infants, children, and teenagers.

🛑 Remember, Community Supplements Care

Peer support groups are incredible spaces to share tips, find comfort, and reduce isolation. However, online discussions should never replace professional medical judgment. Always consult your specialized healthcare team or GI dietitian before making any changes to your treatment plan, medications, or dietary routine.

Are you looking for a specific type of support group, or do you have any questions about these resources?