Short Gut Syndrome Patient, Family & Professional Support Groups

Support Resources

Patient Support Organizations and Non-Profits

https://www.feedingtubeawareness.org/ Feeding Tube Awareness Foundation, a charitable organization devoted to education and awareness for pediatric tube feeding.

https://averysangels.org/ The Global Gastroschisis Foundation, 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.

https://www.thegutsyperspective.org/ The Gutsy Perspective, patient and family driven research and awareness for patients with Short Bowel Syndrome and their families.

https://www.intestinalmalrotation.com/, Intestinal Malrotation Foundation, education, advocacy, resources and support to families impacted by intestinal malrotation.

https://necsociety.org/ NEC Society, non-profit organization dedicated to research, education and advocacy focused on necrotizing enterocolitis (NEC).

https://oley.org/default.aspx The Oley Foundation, the leading organization for support and education for home parenteral and enteral nutrition. Hosts an annual national conference as well as regional conferences.

https://pndu.org/, Parenteral Nutrition Down Under 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).

https://shortbowelfoundation.org/ Short Bowel Syndrome Foundation, a non-profit organization devoted to education, support and empowerment of patients with Short Bowel Syndrome.

http://www.sbsne.org/ Short Bowel Syndrome Foundation for Children of New England, Inc. (SBSNE, Inc.), a 501(c)(3) non-profit charitable organization which was created to provide family support for children afflicted with gastrointestinal conditions, birth defects, and diseases which have led to Short Bowel Syndrome (SBS) and their healthcare providers.

https://www.transplantunwrapped.org/ Transplant Unwrapped, non-profit organization dedicated to support of patients and families with intestinal failure through intestinal rehabilitation and/or intestinal or multivisceral transplant.

https://tubefed.com/, TubeFed by Avanos, Guide to tube feeding by Avanos, the makers of Mic-Key buttons

https://www.ostomy.org/ UOAA, United Ostomy Associations of America, Inc., an organization that promotes quality of life for people with ostomies.

Clinical Support Organizations

https://www.nutritioncare.org/ ASPEN, a medical professional organization whose members are involved in the provision of clinical nutrition therapies.

https://www.avainfo.org/ Association for Vascular Access, organization of healthcare professionals dedicated to promoting and supporting the specialty of vascular access.

https://liftecho.org/web/home LIFT-ECHO, Learn Intestinal Failure Tele-ECHO, online community of medical professionals dedicated to supporting the treatment and management of intestinal failure patients

https://www.mdepinet.net/ The Medical Device Epidemiology Network (MDEpiNet), a Private-Public partnership devoted to advancing a national patient-centered medical device evaluation and surveillance system.

Transplant-Related Organizations

https://cota.org/ Children's Organ Transplant Association, non-profit organization that helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.

https://www.donatelife.net/ Donate Life, 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.

https://optn.transplant.hrsa.gov/ Organ Placement & Transplantation Network, 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.

https://www.transplantunwrapped.org/ Transplant Unwrapped, non-profit organization dedicated to support of patients and families with intestinal failure through intestinal rehabilitation and/or intestinal or multivisceral transplant.

https://transplantliving.org/ UNOS Transplant Living website for transplant patients.

https://unos.org UNOS, the United Network of Organ Sharing, national non-profit organization that manages the United States organ transplant system. Website includes information for patients about the organ donation process

Social Media Groups and Pages

https://www.facebook.com/groups/shortgutsupport, Short Gut Syndrome Family Support Group, our group for patients and families living with Short Gut Syndrome and related diseases. Conversation is focused on support.

https://www.facebook.com/groups/shortgutcollaboration, Short Gut Syndrome Patient, Family, and Professional Collaboration,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.


https://www.facebook.com/groups/470837033108065, AAGF Closing/Vanishing Gastroschisis Group,Avery's Angels Gastroschisis Foundation support for parents of children with closed/vanishing gastroschisis.

https://www.facebook.com/groups/299634454491, AAGF Transplant Group, Avery's Angels Gastroschisis Foundation support for parents of intestinal and multivisceral transplant patients.

https://www.facebook.com/groups/336694516780753, Avery's Angels I CHOSE Gastroschisis (adoption families, Avery's Angel's support group for adoptive parents of children with gastroschisis.

https://www.facebook.com/groups/130261007126450, Blended Diets for Short Guts, discussion focused on using blenderized enteral diets for short gut patients

https://www.facebook.com/groups/centrallinetravelers, Central Line Travelers, Discussing how to travel while on daily IV therapies.

https://www.facebook.com/groups/109596772451031, The Global Gastroschisis Foundation Parents of Pediatric Survivors, Official group of the Global Gastroschisis Foundation, focused on support for parents of surviving pediatric patients.

https://www.facebook.com/groups/intestinocorto, Grupo de soporte Intestino Corto, Spanish language group for Short Bowel Syndrome support

https://www.facebook.com/groups/IntestineTransplant, Intestinal and Multivisceral Transplant Support Group, support for those who have had or are waiting for Intestinal or Multivisceral transplants.

https://www.facebook.com/groups/2068519216692929/?ref=pages_group_cta, Intestinal Malrotation Foundation Group, Information and support for patients with Intestinal Malrotation

https://www.facebook.com/groups/IVdrugshortages, IV Drug Shortage Resource Group, Information and support for the IV drug shortage problem.

https://www.facebook.com/groups/299634454491, Living Life on Total Parenteral Nutrition (TPN), support for patients or parents of patients on total parenteral nutrition (TPN).

https://www.facebook.com/groups/MedicalSupplyExchange,Medical Supply Exchange, group facilitating free exchange of surplus medical supplies.

https://www.facebook.com/groups/119566764896, Oley Foundation, Official group of the Oley Foundation, support for home parenteral and enteral tube feeding.

https://www.facebook.com/groups/297873463714753/, Parenteral Nutrition Down Under, 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)

https://www.facebook.com/groups/1105212563017509, Raising a Short Gut Kiddo: The Survival Guide, support for caregivers of pediatric short gut syndrome patients.

https://www.facebook.com/groups/317618561728875, Short Bowel Syndrome Adults, Kids & Beyond, General support for patients and families of Short Gut Syndrome families.

https://www.facebook.com/groups/1069868289742363, Short Bowel Syndrome Foundation Group, online support group for the Short Bowel Syndrome Foundation. This group tends to be more adult-focused.

https://www.facebook.com/groups/125096724736689, Short gut syndrome oral feeding group, Support for Short Gut patients who are 100 percent orally fed.

https://www.facebook.com/groups/txunwrappedsupport, Transplant Unwrapped Support: Short Bowel & Intestinal Rehab and Transplant, Transplant Unwrapped's support group for patients and caregivers.



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