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.
- Smart Patients Carcinoid and Neuroendocrine Tumor Community The Carcinoid Cancer Foundation is excited to announce a new online community for carcinoid and neuroendocrine tumor (NET) patients, their families and friends. We are partnering with Smart Patients to build this community and hope that combining CCF’s experience educating patients about carcinoid and NET cancers with Smart Patients’ experience with online peer support will result in more patients getting information they need even faster. Join Smart Patients, ask a question, and support others who can learn from you. Click here to join the Smart Patients Carcinoid/NET Community.
- ACOR: Carcinoid Cancer Online Support Group An elist with strong emphasis on support in addition to medical information. For all those suffering from rare cancers, ACOR is likely to be a place of support and source of information about their treatment options. Thousands of people are alive today because of the information they found on an ACOR eCommunity. Click here to sign up for this on line support group.
Click here to access the ACOR archives (a username and password is required).
- CARCINOID CAREGIVERS GROUP (Yahoo) This is an online support group for caregivers of people with carcinoid. It’s a small but caring group started in the spring of 2005. Click to join https://groups.yahoo.com/neo/groups/carcinoidcaregivers/info.
- 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_Carcinoidsemail@example.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. Please note, this group has moved to Facebook. See the link below in Facebook Support Groups.
- 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 firstname.lastname@example.org.
- 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 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 or on the logo below for more information and to join.
- 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 neuroendocrine tumor community called Lovable Lungnoids. Click here to request membership: https://www.facebook.com/groups/lovablelungnoids/?fref=ts.
- Zebra Caregivers Talk NETS, https://m.facebook.com/groups/295352687612082?ref=share
- Young Zebras (Young Adult NET Support Group for young adult NET cancer patients and their caregivers). This is a private group and you need to ask to join, https://www.facebook.com/groups/theyoungzebras
- Aggressive Neuroendocrine Cancer High Grade Carcinoma Support and Information, https://m.facebook.com/groups/1920986924817967?ref=share
- Zebra Angel Support (for family members who have lost a close loved one to NETs or NEC), https://m.facebook.com/groups/249342105213278?ref=share
- MEN1 (this group was formerly on ACOR). “his is a meeting place for you the MEN1 [multiple endocrine neoplasia 1]patients and caregivers to ask question, share support, and learn as much as you can about MEN1.”https://www.facebook.com/groups/1758725424407896/?ref=share
- FACEBOOK Support Groups by State:
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)
- Carcinoid-NETS-Canada A Listserv/Website dedicated for Canadians and their neuroendocrine cancers. To join CLICK HERE.
- CARPA Mailing List (primarily in Swedish) email@example.com
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
- Neuroendocrine Cancer UK, online community To join CLICK HERE.