CARCINOID CANCER
A rare form of "slow-growing" neuroendocrine cancer
Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
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CARCINOID CANCERA rare form of "slow-growing" neuroendocrine cancerSusan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness
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ON-LINE SUPPORT GROUPSUpdated: December 18, 2007 Scroll down for: Local support groups with a web site and/or communication via email - NEW Association of Cancer Online Resources (ACOR) is a non-profit organization that supports multiple mailing-lists for many kinds of cancer and their treatments, delivering almost 2 million messages each week. CLICK HEREThe ACOR CARCINOID Cancer On Line Support Group began 2 April 1997 -- now has more than 500 participants. This is a forum for questions, answers, factual information, tips on living with this type of cancer, treatments, shared experiences, a bit of humor, poetry, plus good things to think about, and a place to receive and give emotional support. The messages are archived for all to use. To join the ACOR Carcinoid Cancer On Line Support Group: CLICK HERE The Carcinoid (Yahoo) On Line Information and Discussion Group began April 18, 1998 -- now has more than 500 participants. This is a MODERATED mailing 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 discussion of current treatment practices. This is an INFORMATION DISCUSSION mailing list and it is NOT a support group. To join the Carcinoid YAHOO On Line Discussion Group: CLICK HERECarcinoid
Caregivers Group This is an online support group for caregivers of
people with carcinoid. It is a small but caring group started in the
spring of 2005.
CARCINOID
SUPPORT LUNG NOIDS
MEN1 Support Group
NET
Islet Cell Tumor Support Group
NOID Friends:
"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." Zollinger Ellison Syndrome (ZES). This is a support group for patients, caregivers, and family members. It is the hope of list owners 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. CLICK HERE NEW - Local support groups with a web site and/or communication via email - NEW NORTHERN CALIFORNIA
NEUROENDOCRINE CANCER FIGHTERS (NCNCF) NORTHERN CALIFORNIA
CARCINOID NEUROENDOCRINE SUPPORT GROUP
SUPPORT~EDUCATION~AWARENESS
(SEA)
for those Living with Carcinoid CONNECTICUT
CARCINOID INITIATIVE (CCI)
New England
Carcinoid Connection, Inc. (NECC)
Capital Area Carcinoid Survivors (CACS) Florida
Carcinoid Support Group
Metro
Atlanta Carcinoid Awareness Group (MACAG) Chicagoland
Carcinoid Fighters
Capital Area Carcinoid Survivors (CACS) BOSTON
CARCINOID SUPPORT GROUP Michigan
Carcinoid Support Group
Metro NY Carcinoid Support Group
(MNYCSG) Carcinoid Cancer
Awareness Network, Inc. (CCAN) MidAtlantic
Carcinoid-NeuroEndocrine Tumor Association (MACNETA)
Pennsylvania Carcinoid
Cancer Advocacy Network (PCCAN), Delaware
Valley Carcinoid Connection CARCINOID
CANCER TEXAS SUPPORT (CCTS) There is
an on-line group for Canadians and some interested Americans. CarciNor
(the Carcinoid patients association in Norway) Carcinoid Patients Organization in Poland CARCINOID
PATIENTS ASSOCIATION (CARPA)
in
Sweden. NET Patient Foundation
incorporating Living With Carcinoid (in the UK)
Carcinoid-Neuroendocrine Tumour Society-Canada (CNETS)
NEW - North American Neuroendocrine
Tumor Society (NANETS)
We are pleased to announce
that the
Association of Cancer
Online Resources (ACOR) has agreed to
host a Listserv called
Carcinoid-Dr. Members of the
Listserv communicate with each
other by sending
e-mails to the Listserv,
which then distributes the messages to all other
members. This Listserv was
activated in February
2006.
Membership in this Listserv is limited to healthcare professionals. Carcinoid patients and their caregivers are welcome to tell the members of their medical team about this resource. Any healthcare professional who wishes to subscribe
should send an e-mail to
carcinoid-dr-request@listserv.acor.org
and describe their professional credentials and their
reasons for
joining,
and provide their office address and phone number.
Feel free to share this information with other Carcinoid
and neuroendocrine patients and their
caregivers, as well
as any
healthcare professionals who you believe may be
interested in participating in
Carcinoid-Dr.
Since 1996 --- when I first located others with Carcinoid --- I have answered every email sent to me, although some replies were delayed longer than I liked. I am NO longer able to reply to all e-mails due to the volume and other things going on in my life (all good). I do love hearing from others, but an unable to reply to all individually. This web site was 10 years old on April 27, 2007, and my plan is to keep it updated for many many years to come. Since my husband "retired" I am away from my computer for days, and sometimes, weeks at a time. Yes, there is wireless internet and we have tried that a number of places. But, if I deal with email when we are away from home then it is not a "restful vacation" for me. PLEASE use the SEARCH capability at the top my pages. You may search for a word, a phrase, a drug, a treatment, a book title or anything you can think of. You may search this site only, or search the complete World Wide Web. To speak with a person please know you may call the “telephone information and support line” of the Carcinoid Cancer Foundation, Inc. (CCF), Tuesday through Thursday 10 a.m. to 4 p.m. Eastern Time at 1-888-722-3132 (free) or 1-914-693-1001. “The information and support line” is staffed by medical professionals. Mondays and Fridays are research days, if you call then and do not reach a person do leave a clear message. The Carcinoid Cancer Foundation’s (CCF) superb web site is at http://www.carcinoid.org + + + + + + + + + + CCF - Serving the
carcinoid/NETs patient and medical community for close to forty
years (chartered in 1968) * * * * * * * * * * DISCLAIMER: I am a patient and NOT a medical doctor or health care professional. I share information and links to information that has been helpful to me and that I believe to be correct and good, but I cannot guarantee the accuracy of this information, except for MY stories. I urge you not to rely only on this information but I believe you should discuss your situation and information with your medical doctors and/or other medical professionals. "Sunny" Susan Anderson Copyright © 1997-2007 Susan L. Anderson. All Rights Reserved. |
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Send mail to
SunnySusan@cox.net with
questions or comments about this web site.
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