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

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://averysangels.org/

The Gutsy Perspective

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

Intestinal Malrotation Foundation

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

NEC Society

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

The Oley Foundation

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.
https://oley.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://pndu.org/

Short Bowel Syndrome Foundation

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

UOAA - United Ostomy Associations of America, Inc.

an organization that promotes quality of life for people with ostomies.
https://www.ostomy.org/

Clinical Support Organizations

ASPEN - Association for Parenteral and Enteral Nutrition

a medical professional organization whose members are involved in the provision of clinical nutrition therapies like parenteral and enteral nutrition.
https://www.nutritioncare.org/

Association for Vascular Access

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

LIFT-ECHO, Learn Intestinal Failure Tele-ECHO

an online community of medical professionals dedicated to supporting the treatment and management of intestinal failure patients.
https://liftecho.org/web/home

The Medical Device Epidemiology Network (MDEpiNet)

a Private-Public partnership devoted to advancing a national patient-centered medical device evaluation and surveillance system.
https://www.mdepinet.net/

Transplant-Related Organizations

Children's Organ Transplant Association

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

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://www.donatelife.net/

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://optn.transplant.hrsa.gov/

Transplant Unwrapped

UNOS Transplant Living website

an information website created by UNOS for transplant patients.
https://transplantliving.org/

UNOS - the United Network of Organ Sharing

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

Company-sponsored Education Pages

Home TPN Consumer Education Seminars by Nutrishare

Free quarterly online seminars free for TPN patients, caregivers, and families, regardless of TPN provider.
https://nutrishare.com/tpn-support/education/

shortbowelsyndrome.com by Takeda

Information about Short Bowel Syndrome, including free publications by mail from the makers of Gattex.
https://shortbowelsyndrome.com/

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

Social Media Groups and Pages

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/shortgutsupport">

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/shortgutcollaboration

AAGF Closing/Vanishing Gastroschisis Group

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

AAGF Transplant Group

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

Association for Vascular Access

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

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/336694516780753

Blended Diets for Short Guts

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

Central Line Travelers

discussing how to travel while on daily IV therapies.
https://www.facebook.com/groups/centrallinetravelers

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/109596772451031

Grupo de soporte Intestino Corto

Spanish language group for Short Bowel Syndrome support
https://www.facebook.com/groups/intestinocorto

The Gutsy Perspective

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

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/IntestineTransplant

Intestinal Malrotation Foundation Group

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

IV Drug Shortage Resource Group

Information and support for the IV drug shortage problem.
https://www.facebook.com/groups/IVdrugshortages

Living Life on Total Parenteral Nutrition (TPN)

support for patients or parents of patients on total parenteral nutrition (TPN).
https://www.facebook.com/groups/299634454491

Medical Supply Exchange

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

The Oley Foundation

official page of the Oley Foundation non-profit organization providing support, updates, and information for enteral and parenteral nutrition support patients.
https://www.facebook.com/theoleyfoundation

Oley Foundation - unofficial

unofficial group made up of members of the Oley Foundation offering support for home parenteral and enteral tube feeding.
https://www.facebook.com/groups/119566764896

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/297873463714753/"

Short gut syndrome oral feeding group

Support for Short Gut patients who are 100 percent orally fed.
https://www.facebook.com/groups/125096724736689

Transplant Unwrapped Support: Short Bowel & Intestinal Rehab and Transplant

Transplant Unwrapped's support group for patients and caregivers.
https://www.facebook.com/groups/txunwrappedsupport