Short Gut Syndrome Patient, Family & Professional Support Groups

Support Resources

The following is a list of groups, non-profits and organizations that provide support to patients and clinicians in the short bowel syndrome community. This list is provided as a resource and is not an endorsement of any company or organization.

Patient Support Organizations and Non-Profits

a non-profit charitable organization and support organization devoted to support, research and awarenes of gastroschisis. Their support organization is known as Avery's Angels.

patient and family driven research and awareness for patients with Short Bowel Syndrome and their families.

education, advocacy, resources and support to families impacted by intestinal malrotation.

non-profit organization dedicated to research, education and advocacy focused on necrotizing enterocolitis (NEC).

the leading non-profit organization for support, education and patient advocacy for home parenteral and enteral nutrition. Hosts an annual national conference, online webinars, and support groups.

Parenteral Nutrition Down Under Inc. (PNDU) is a self-funded, non-profit support group for consumers and carers in Australia and New Zealand on Home Parenteral Nutrition (HPN).

a non-profit organization devoted to education, support and empowerment of patients with Short Bowel Syndrome.

non-profit organization dedicated to support of patients and families with intestinal failure through intestinal rehabilitation and/or intestinal or multivisceral transplant.

an organization that promotes quality of life for people with ostomies.

Clinical Support Organizations

a medical professional organization whose members are involved in the provision of clinical nutrition therapies like parenteral and enteral nutrition.

an organization of healthcare professionals dedicated to promoting and supporting the specialty of vascular access. ,

an online community of medical professionals dedicated to supporting the treatment and management of intestinal failure patients.

a Private-Public partnership devoted to advancing a national patient-centered medical device evaluation and surveillance system.

Transplant-Related Organizations

a non-profit organization that helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.

a national non-profit organization that works to raise awareness of the need for organ donors and increase the number of donated organs and tissues. The national chapters leads state Donate Life teams.

public-private partership that links professionals involved in U.S. organ donation and transplantation. This organization collects data on transplant outcomes for all organ transplant programs in the country. Demographics and survival statistics can be found in the Data & Calculators section of the website.

non-profit organization dedicated to support of patients and families with intestinal failure through intestinal rehabilitation and/or intestinal or multivisceral transplant.

an information website created by UNOS for transplant patients.

the national non-profit organization that manages the United States organ transplant system. Website includes information for patients about the organ donation process.

Company-sponsored Education Pages

Free quarterly online seminars free for TPN patients, caregivers, and families, regardless of TPN provider.

Information about Short Bowel Syndrome, including free publications by mail from the makers of Gattex.

Social Media Groups and Pages

our group for patients and families living with Short Gut Syndrome and related diseases. Conversation is focused on support.">

our group that invites conversation from all members of the Short Gut Syndrome community from patients to clinicians and from families to industry. Conversation focuses on understanding and quality of care for Short Gut Syndrome.

Avery's Angels Gastroschisis Foundation support for parents of children with closed/vanishing gastroschisis.

Avery's Angels Gastroschisis Foundation support for parents of intestinal and multivisceral transplant patients.

Official facebook page for AVA, an association of healthcare professional devoted to vascular access.

Avery's Angel's support group for adoptive parents of children with gastroschisis.

discussion focused on using blenderized enteral diets for short gut patients.

discussing how to travel while on daily IV therapies.

Official group of the Global Gastroschisis Foundation, focused on support for parents of surviving pediatric patients.

Spanish language group for Short Bowel Syndrome support

Facebook page for The Gutsy Perspective: Short bowel syndrome community-driven research organization to study well-being in the SBS & IF pops.

support for those who have had or are waiting for Intestinal or Multivisceral transplants.

Information and support for patients with Intestinal Malrotation

Information and support for the IV drug shortage problem.

support for patients or parents of patients on total parenteral nutrition (TPN).

group facilitating free exchange of surplus medical supplies.

official page of the Oley Foundation non-profit organization providing support, updates, and information for enteral and parenteral nutrition support patients.

unofficial group made up of members of the Oley Foundation offering support for home parenteral and enteral tube feeding.

group for members of Parenteral Nutrition Down Under (PNDU) – a support group for Australian and New Zealand consumers and carers living with Intestinal Failure requiring Parenteral (intravenous) Nutrition (PN) at home (HPN)"

support for caregivers of pediatric short gut syndrome patients.

Facebook page for non-profit organization seeking to raise awareness and provide support for rare and complex diseases.

General support for patients and families of Short Gut Syndrome families.

online support group for the Short Bowel Syndrome Foundation. This group tends to be more adult-focused.

Support for Short Gut patients who are 100 percent orally fed.

Transplant Unwrapped's support group for patients and caregivers.

This website is created by families for families. This site does not provide medical or any other health advice, diagnosis, and/or treatment. This site and its services, including the information above, are for informational purposes only and are not a substitute for professional medical or health advice, examination, diagnosis, and treatment. Always seek the advice of your physician or other health care provider before starting any new treatment, making any changes to existing treatment, or altering in any way yours or your child's current care or diet regimen. Do not delay seeking or disregard medical advice based on the information on this site. Some of the information on this site may be incorrect or out of date. No health information on this site is regulated or evaluated by the Food and Drug Administration and therefore the information should not be used to diagnose, treat, cure, or prevent any disease without the supervision of a medical professional.