Find Resources for

Short Bowel Support
 
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Short bowel syndrome community

It is believed that approximately 10,000 – 15,000 adults in the United States have short bowel syndrome (SBS) that requires parenteral nutrition (PN). Many more have SBS but do not need PN, and receive their nutrition through oral or enteral delivery.

Both patients and physicians have been active in helping those with SBS find support in managing their condition. The following websites and foundations can provide guidance, information and opportunities to volunteer and make a difference in helping others overcome SBS.

 

Crohn's and Colitis Foundation of America (CCFA)

www.ccfa.org
The CCFA is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. Their website provides detailed disease information, clinical trials, and support.

 

Healthline

www.healthline.com/health/crohns-disease
Healthline provides a comprehensive overview of Crohn’s Disease as a critical starting point for individuals and/or their loved ones.

 

International Foundation for Functional Gastrointestinal Disorders (IFFGD)

www.iffgd.org
The IFFGD is dedicated to informing, assisting and supporting people affected by gastrointestinal disorders.

 

United Ostomy Associations of America (UOAA)

www.ostomy.org
The UOAA is a national network for bowel and urinary diversion support groups. Their website provides practical information and networking opportunities through support groups.

 

The Short Bowel Syndrome Foundation Inc. (SBSF)

www.shortbowelfoundation.org
The Short Bowel Syndrome Foundation, Inc. (SBSF), is a community of SBS patients, family members, and healthcare providers. Continually striving to bring new & up to date information on the topic of Short Bowel Syndrome (SBS) through education and support services.

 

The Oley Foundation

www.oley.org
The Oley Foundation is committed to patients using parenteral and enteral nutrition. Their website contains a variety of practical information such as travel tips, patient information and networking opportunities.  

 

My HPN

oley.org/general/custom.asp?page=MyHPN_Modules
My Home Parenteral Nutrition (My HPN) is an educational tool to help home parenteral nutrition consumers (HPN or home IV-fed patients) improve their health and quality of life.

 

American Society of Parenteral and Enteral Nutrition (A.S.P.E.N.)

www.nutritioncare.org/
The A.S.P.E.N. patient information center was designed to provide patients and caregivers with information about nutrition support, including parenteral and enteral nutrition.

 

Sustain:  A.S.P.E.N.'s National Patient Registry for Nutrition Care

www.nutritioncare.org/sustain
A.S.P.E.N. is introducing a national patient registry for nutrition care. The specific goals of SustainTM will be to collect information regarding the patients and populations who require home parenteral nutrition (HPN) in the United States, measure outcomes associated with HPN and publish the findings in order to improve the quality of care for patients receiving HPN.

 

Transplant Living

www.transplantliving.org
Transplant Living is a website designed to help prepare people for the various stages of organ transplantation.

 

Clinical Trial Registry

clinicaltrials.gov/ct/gui
Registry of federally and privately supported clinical trials.

 

National Organization for Rare Disorders (NORD)

http://www.rarediseases.org
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" 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.

 

Rare Disease Day

rarediseaseday.us
First observed in Europe in 2008, Rare Disease Day is spreading around the world. In 2010, 46 countries participated. World Rare Disease Day is observed on the last day of February of each year.  The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.


Key Medical Professional Organizations and Meetings

American Society of Parenteral and Enteral Nutrition (A.S.P.E.N.)

www.nutritioncare.org

A.S.P.E.N. has more than 5,000 members and is committed to improving patient care by advancing science and practice of nutrition support therapy.

A.S.P.E.N. holds an annual meeting which is the only scientific and clinical conference dedicated to specialized nutrition support research and clinical practice.
www.nutritioncare.org/CNW

 

American College of Gastroenterology  (ACG)

www.acg.gi.org
The mission of the ACG is to advance the medical treatment and scientific study of gastrointestinal disorders. The College strives to serve the evolving needs of physicians in the delivery of high-quality scientific, humanistic, clinical, ethical and cost-effective health care to gastroenterology patients. The ACG Website also has informational available for patients.

 

American Gastroenterological Association (AGA)

www.gastro.org
The AGA promotes basic and clinical research in gastroenterology and hepatology. Its goal is to make AGA the home for the highest-quality scientific and clinical knowledge for GI clinicians and researchers. In addition, AGA's plan is to influence public policies and build political support for the science and practice of gastroenterology and hepatology. The AGA also provides members with resources, tools and skills to enhance practice and provide quality patient care.

 

American College of Surgeons (ACS)

www.facs.org/
The ACS is a scientific and educational association of surgeons that was founded in 1913 to improve the quality of care for the surgical patients by setting high standards for surgical education and practice. Members of the American College of Surgeons are referred to as "Fellows." The letters FACS (Fellow, American College of Surgeons) after a surgeon's name mean that the surgeon's education and training, professional qualifications, surgical competence and ethical conduct have passed a rigorous evaluation, and have been found to be consistent with the high standards established and demanded by the College.

 

Society of Gastroenterology Nurses and Associates (SGNA)

www.sgna.org
The SGNA is a professional organization of nurses and associates dedicated to the safe and effective practice of gastroenterology and endoscopy nursing. Their mission is to advance the science and practice of gastroenterology and endoscopy nursing through education, research, advocacy and collaboration, and  by promoting the professional development of its members in an atmosphere of mutual support.

 

Infusion Nurses Society (INS)

www.ins1.org
The INS is committed to bringing innovative new resources and opportunities to a wide range of healthcare professionals who are involved with the specialty practice of infusion therapy.


Click here to learn more about conferences and events.