There’s a Community of Others Like You
You’re not alone in this. There are others like you and resources available that can help.
THE SBS COMMUNITY
Although SBS is a rare condition, there are many out there like you. Regardless of how it was introduced into your life or that of a loved one, many experience the same sorts of challenges that you do.
Luckily, many patients, doctors and caregivers have an active voice in the digital SBS community providing tips, information and a sense of understanding to others like you.
Remember to always talk to your doctor before you make any adjustments to your treatment plan.
Check out the following websites, foundations and forums for information that may help you overcome some of the challenges you face with SBS.
SBS PATIENT COMMUNITY RESOURCES
The ASPEN patient information center was designed to provide patients and caregivers with information about nutrition support, including parenteral and enteral nutrition.
The CCFA is a nonprofit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. Their website provides detailed disease information and resources.
The IFFGD is dedicated to informing, assisting and supporting people affected by gastrointestinal disorders.
NORD is a federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.
The Oley Foundation serves patients on home parenteral (IV) and enteral (tube-fed) nutrition. Their website contains a variety of practical information such as troubleshooting guides, travel tips, networking and educational opportunities, as well as printable tools.
SBSF is a community made up of SBS patients, family members and healthcare providers. It continually strives to bring new and up-to-date information on the topic of Short Bowel Syndrome (SBS) through education and support services.
UOAA promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration. UOAA's website provides practical information and opportunities for peer support through affiliated groups.
Learn how Norma reaches out to others in her community for support.
SBS CAREGIVER COMMUNITY RESOURCES
CAN’s goal is to improve the quality of life for caregivers by offering free education, peer support and resources.
Working as a public voice for caregivers, the FCA is the first community-based nonprofit organization in the U.S. to voice the needs of long-term caregivers. The FCA supports and sustains caregivers with national, state and local programs and resources.
This nonprofit coalition of national organizations focuses on advancing family caregiving through research and advocacy. The NAC analyzes policy, develops best-practice programs and helps families work through caregiving issues.