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. For direct access to International elists click here
US Elists
ACOR; Carcinoid Cancer Online Support Group
A non-moderated elist with strong emphasis on support in addition to medical information. For all those suffering from rare cancers, ACOR is likely to be the only place of support andthe main source of accurate information about their treatment options. Thousands of peopleare 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 (Yahoo) Online Information and Discussion Group
This is a moderated email list for patients, parents, friends, researchers, and physicians, to discuss clinical, nonclinical issues and advances pertaining to Carcinoids. This includes patient experiences, hormone induced psychological issues, new research, clinical trials, and discussions of current treatment practices. This is an INFORMATION/ DISCUSSION elist. This is NOT a support group. Click here to access and sign up for this group
CARCINOID SUPPORT
A new, unique, support group on Yahoo called carcinoid_support has just been started. The purpose of this group is:
We are 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.
NET_IsletCellTumor@egroups.com.
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.
Click to join ... http://health.groups.yahoo.com/group/NET_ISLETCELL
MACAG
On-line 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. We also welcome family members and Medical Professionals who wish to share information with our members. 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
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.
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 health care team. Join us and welcome.
CARPA Mailing List (In Swedish mostly)
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.
Owners: Marina Walström
ONLINE SUPPORT GROUPS