Short Gut Syndrome Patient, Family & Professional Support Groups

Resources

Support Organizations and Non-Profits

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://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://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://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.

Social Media Groups and Pages

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Devices, Products, Pharmacies, and Pharmaceuticals

Nutrition and Hydration Products

Ceralyte, https://ceraproductsinc.com/, Oral Rehydration Solution

DripDrop, https://www.dripdrop.com/ Oral Rehydration Solution

Elecare, https://elecare.com/conditions/short-bowel-syndrome, amino acid based hypoallergenic formula

Kate Farms, https://www.katefarms.com/, organic, plant-based formulas including peptide formulas.

Living Hope and Nourish, by Functional Formularies, https://www.functionalformularies.com/Organic whole-food formulas for tube-feeding.

Neocate, https://www.neocate.com/food-allergy-resources/food-allergy-conditions/short-bowel-syndrome-malabsorption/diet-management/ amino acid based hypoallergenic formula

Pediasure Peptide, https://pediasurepeptide.com/ Peptide based formulas for pediatric GI disorders.

Durable Medical Equipment

Moog Medical, https://www.moogmedical.com/, manufacturers of Curlin infusion therapy pumps and Infinity Enteral Feeding pumps.

Cardinal Health: Kangaroo Enteral Feeding, https://www.cardinalhealth.com/en/product-solutions/medical/enteral-feeding.html, Kangaroo and Kangaroo Joey Enteral Feeding pumps, tubes, extensions, gravity bags, etc.

Pharmaceutical companies

Gattex (teduglutide), https://www.gattexhcp.com/short-bowel-syndrome/, medication for adult and pediatric short bowel syndrome patients who are dependent on parenteral nutrition that stimulates intestinal adaptation.

Fresenius Kabi, https://freseniuskabinutrition.com/, Manufacturers of SMOF and Omegaven, alternative intravenous lipid emulsions.




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