In addition to support groups that hold regular meetings, there are also online support groups and elist discussion groups (US and international) that you may find helpful.

US Elists

  • MEN1 Support Group MEN1 is a hereditary syndrome that causes tumors—mostly endocrine—in different organs. Sometimes, but not often, carcinoid tumors develop. This elist was created for patients, family members, and caregivers to offer caring, support, guidance, and up-to-date information on living and coping with Multiple Endocrine Neoplasia Type 1 (MEN1). All are welcome to join. Just enter the link above. Hope to see you there. Please note, this group has moved to Facebook.  See the link below in Facebook Support Groups.
  • INSPIRE, the online support community, has added a section for Neuroendocrine (NETS) / Carcinoid Tumors in the Lung Cancer community. All who are interested are invited to join. INSPIRE connects patients, families, friends and caregivers for support and inspiration. CLICK HERE for more information and to join the Inspire online support group specifically for the lung neuroendocrine tumor community.
  • INSPIRE FOR PANCREATIC NEUROENDOCRINE TUMOR (PNET) COMMUNITY INSPIRE, the online support community, has added a new section for the Pancreatic Neuroendocrine Tumors (PNETs) community.  INSPIRE connects patients, families, friends and caregivers for support and inspiration. CLICK HERE for more information and to join.

Inspire Pancreatic Neuroendocrine Tumor Support Community

  • ZES (Zollinger-Ellison Syndrome) online support group This is a support group for patients, caregivers, and family members. It is our hope to offer current information, support, and knowledge so we can all be “in the know,” for only in knowledge can we truly be a partner with our healthcare team. Join us and welcome.


For those who use Facebook, there are many carcinoid/NET groups including different nonprofit pages, closed groups (you need to request to become a member), individual advocate pages, etc. When you are on the Facebook site, use the search box to find these groups.  And please visit and Like the Carcinoid Cancer Foundation’s Facebook page by clicking here!


  • FACEBOOK Support Groups by State:

Alaska Carcinoid Cancer Connection

Delaware Carcinoid Cancer Connection

Hawaii Carcinoid Cancer Connection

Idaho Carcinoid Cancer Connection

Iowa Carcinoid Cancer Connection

Kansas Carcinoid Cancer Connection

Kentucky Carcinoid Cancer Connection

Mississippi Carcinoid Cancer Connection

Montana Carcinoid Cancer Connection

Nebraska Carcinoid Cancer Connection

New Mexico Carcinoid Cancer Connection

North Dakota Carcinoid Cancer Connection

Ohio, Buckeye NETS

Oklahoma Carcinoid Cancer Connection

Neuroendocrine Cancer Support Oklahoma (created by Katie Adams, this is a new group in 2017, and will be meeting in person in Oklahoma in the future)

Tennessee Carcinoid Cancer Connection

Wisconsin Carcinoid Cancer Connection

Wyoming Carcinoid Cancer Connection

International Elists


  • CARPA Mailing List (primarily in Swedish)
    Mailinglistan vänder sig till patienter med hormonproducerande tumörer, t ex carcinoider, endokrina pankreastumörer, binjurebarkscancer och liknande. Även anhöriga och vårdpersonal är välkomna.
    Owner: Marina Walström

United Kingdom

  • Neuroendocrine Cancer UK, online community  To join CLICK HERE.


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