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).
- 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.
- 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) firstname.lastname@example.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
- Neuroendocrine Cancer UK, online community To join CLICK HERE.