Short Bowel Syndrome: Seen, Heard, Supported

Patient and Caregiver Education Resource Hub

Visit the following resources for information about short bowel syndrome (SBS).

  • Information About SBS

    American Gastroenterological Association (AGA) GI Patient Center: Short Bowel Syndrome Resource Center

    • A resource for patients, caregivers, and the general public to learn more about SBS, including symptoms, related conditions, and management options.

  • Clinical Directory for SBS Care

    Centers of Excellence

    • A directory of Intestinal Rehabilitation Programs and intestinal failure centers across the United States.

  • Advocacy Groups

    American Society of Parenteral and Enteral Nutrition (ASPEN)

    • A global interprofessional community of dietitians, nurses, nurse practitioners, pharmacists, physicians, physician assistants, researchers, scientists, and other health professionals; provides patients and caregivers with information about nutrition support, including parenteral and enteral nutrition

    Crohn's & Colitis Foundation (CCF)

    • A nonprofit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis; provides detailed disease information and resources

    International Foundation for Gastrointestinal Disorders (IFFGD)

    • A nonprofit education and research organization dedicated to informing, assisting, and supporting people affected by gastrointestinal disorders; provides detailed disease information and resources

    National Organization for Rare Disorders (NORD)

    • The first national nonprofit to represent all individuals and families affected by rare disease; dedicated to helping people with rare diseases and committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service

    Oley Foundation

    • A nonprofit home nutrition therapy community and advocacy group that enriches the lives of those living with home IV nutrition or tube feeding through advocacy, education, community, and innovation

    Short Bowel Syndrome Foundation

    • An international nonprofit advocacy and support organization for patients, caregivers, and clinicians navigating SBS and intestinal failure; their educational hub provides practical guides, peer resources, and information about clinical programs and transition support

    Strategic Alliance for Intercultural Advocacy in GI (SAIA)

    • A global patient- and clinician-led organization that aims to create culturally sensitive resources, research, and education for patients, caregivers, and healthcare providers managing chronic GI conditions to minimize delays, dispel stigma, promote early diagnosis, and improve access to treatment for all

    United Ostomy Associations of America, Inc. (UOAA)

    • A nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery

  • Caregiver Resources

    Caregiver Action Network (CAN)

    • A nonprofit organization providing free education, peer support, and resources to help improve the quality of life for caregivers

    Family Caregiver Alliance (FCA)

    • The first community-based nonprofit organization in the United States to voice the needs of long-term caregivers; supports and sustains caregivers with national, state, and local programs and resources

    National Alliance for Caregiving (NAC)

    • A nonprofit coalition of national organizations that focuses on advancing family caregiving by analyzing policy, developing best-practice programs, and helping families work through caregiving issues

Short Bowel Syndrome Questions

Please submit your questions about SBS in the box below. The questions will be answered by Dr. Subramanian during the Instagram Live event on September 21, or the answer will be posted on this page by September 30. Do not submit personal health information, and please note that we are not able to give medical advice.

Supported by an educational grant from Takeda Pharmaceuticals U.S.A., Inc.