Short Bowel Syndrome (SBS) is a rare condition. But resources, educational materials and community are available — you just have to know where to look! Here’s a list of organizations that offer support, information and opportunities to connect with people who might understand your situation from first-hand experience.
The American Society for Parenteral and Enteral Nutrition (ASPEN) is dedicated to improving patient care by advancing the science and practice of nutrition support therapy and metabolism. Founded in 1976, ASPEN is an interdisciplinary organization whose members are involved in the provision of clinical nutrition therapies, including parenteral and enteral nutrition.
The Crohn’s & Colitis Foundation 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 dedicated to improving the lives of patients and families affected by rare diseases and supporting the disease-specific organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, policy, advocacy, research and patient assistance services.
The Oley Foundation serves patients on home parenteral (IV) and enteral (tube-fed) nutrition. Their website contains a variety of practical information such as trouble shooting guides, travel tips, networking and educational opportunities, as well as printable tools.
The Short Bowel Syndrome Foundation is a national resource for short bowel patients and their family and friends. SBSF 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.
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, FCA is the first community-based nonprofit organization in the U.S. to voice the needs of long-term caregivers. 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.
Some of the websites listed here allow for free exchange of information (for example, chat rooms and forums). Shire does not sponsor or endorse this free exchange of information. Shire is not responsible for the content or services provided by any websites that are not owned by Shire. Websites that are not owned by Shire are governed by their own polices and guidelines, including privacy policies.
Important Safety Information: GATTEX may cause serious side effects including making abnormal cells grow faster, polyps in the colon (large intestine), blockage of the bowel (intestines), swelling (inflammation) or blockage of your gallbladder or pancreas, and fluid overload.
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