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

  • CARCINOID (Yahoo) Online Information and Discussion Group This is a moderated e-mail list for patients or primary caregivers, researchers, and physicians to discuss clinical, nonclinical issues and advances pertaining to carcinoid/gastric NETs. This includes patient experiences, hormone-induced psychological issues, new research, clinical trials, and discussions of current treatment practices. The list has several physicians as members or patients who provide answers to questions on all fields of research and treatment of the gastric group of neuroendocrine tumors.  This list has never been a support list and has always been moderated to maintain a low noise to valuable message ratio so its archives comprise almost 19,000 entries of useful information about the disease.  The membership of this list has been in excess of 1,000 for the last 5 years or longer.  The owner is a 34 year survivor with active carcinoid cancer.This is an INFORMATION/DISCUSSION elist. This is NOT a support group. As with all lists, the archives are available to anyone with a password and username. Click here to access the archives or to sign up for this group
  • CARCINOID SUPPORT The purpose of this unique support group on Yahoo called Carcinoid Support is for “cancer survivors (mostly carcinoid) who today have no prospect of going into remission but whose treatment regimens are geared towards making their cancer a chronic condition. Here we discuss more about learning to live with carcinoid, day by day–not the medical aspect but the emotional adjustment.”To sign up, click here.
  • Heartland Online Support Group This is a support group for carcinoid cancer survivors and caregivers in the heartland of America, including members from Missouri, Kansas, Nebraska, Iowa, Tennessee and Oklahoma at the present time. We are a dynamic, proactive growing group that was started in July 2008. Interested parties should send a request stating your preferred email address, your location, your carcinoid story, and your reason for wanting to join this group to: Heartland_Carcinoids-subscribe@yahoogroups.com
    or Heartland_Carcinoids@yahoo.com
  • NET Islet Cell Tumor E-Group An information and education group for patients, family members, and medical professionals focused on Islet Cell Tumors. This list is monitored by medical professionals, and is a good place to ask questions about the disease and to share clinical experiences. This is NOT an emotional support group. To join, click here.
  • MACAG Online Support Group The Metro Atlanta Carcinoid Awareness Group (MACAG) was established in November 2004. The group was established as an informal communications enabler for those who reside in Georgia and have been diagnosed with carcinoid cancer. Family members and medical professionals who wish to share information with members are also welcomed. To join CLICK HERE
  • 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.
  • NOID Friends On Topica, we are here to serve everyone’s needs, and encourage people to post without fear of retribution. “We are here to share about all kinds of topics — carcinoid (of course), medical articles, health insurance, medicines, treatment options, member experiences, symptom management, medical providers, case management, dealing with doctors and other medical providers, Social Security Disability (carcinoid qualifies), emotional issues, family concerns, caregiver info and support, understanding procedures, learning to be a better patient, dealing with a chronic illness, specialty labs, and so much more.  If you can think of it, we can discuss it!  We are all in this together.”

To join, send an email to noids-subscribe@topica.com.

  • LUNGNOIDS (you must be a member of Yahoo to sign up, once signed up search for Lungnoids to join the group)This is a carcinoid online group dedicated to lungnoids and other foreguts. This group was started because the standard of treatment for lung/stomach/pancreatic noids is different than the intestinal noids.
  • INSPIRE FOR LUNG CANCER SURVIVORS 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. There is also an Inspire online support group specifically for the lung neuroendocrine tumor community.  CLICK HERE 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.
  • Facebook Support Groups: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! There is an especially active group for the lung carcinoid community called Lovable Lungnoids. Click here to request membership: https://www.facebook.com/groups/lovablelungnoids/?fref=ts.
  • There are a number of states that do not yet have carcinoid/neuroendocrine tumor (NET) support groups that meet in person.  We express our deepest appreciation to Jennifer Holm, leader of the Iowa Carcinoid Cancer Connection support group, for creating Facebook groups for the states listed below so that carcinoid/NET patients and caregivers can connect with others in their state.  Please be in touch with the Carcinoid Cancer Foundation if you are considering becoming an in-person support group; we are happy to help!

 

  • 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

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

Canada

Sweden

  • CARPA Mailing List (primarily in Swedish) carpa@kanalen.org
    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

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