We are happy to announce that we now have 50+ support groups in the US. Many groups have created their own website where you can get information about their mission, meetings and other valuable information.. We encourage you to visit these sites.
Meet with others dealing with carcinoid (themselves, or a family member) in a casual informal setting.
Please feel free to join us Meeting every second Sat. of the month 1 to 3 p.m.
Location: The Wellness Community of Central Phoenix,
360 E Palm Lane, PHOENIX, AZ 85004-1531.
Park in the rear parking lot
Phone: (602) 712-1006
For more information and meeting dates contact:
Marilyn Burke at 480-926-0035 or email her at: act_mail@yahoo.com
Arkansas
Carcinoid One On One
A support group for those dealing with carcinoid, their family, friends, and caregivers. We meet on Thursdays at 11:00 am at the Mercy Cancer Center in Hot Springs, Arkansas.
For more information your contact person is:
Terri Wright terris12@sbcglobal.net
California
Kaiser Carcinoid Support Group This new group is open to all carcinoid patients, their family, friends and caregivers who are seeking increased awareness, education and support about carcinoid cancer.
We meet on the first Saturday of each month from 1:00 to 4:00 PM at:
Kaiser Permanente Medical Center
Medical Offices-3rd Floor Classroom 1
1600 Eureka Blvd.
Roseville, CA 95661
For more information contact:
Toni Hussain at thussain@wefit2u.com
Northern California Carcinoid Neuroendocrine Support Group(NCCN)
Our mission is to help those with carcinoid and other neuroendocrine tumors to share challenges and experiences, learn about prognosis and treatments, find information, deal effectively with the medical community and help the medical community deal with us. Meetings are held every third Saturday, odd months from 1-4 pm at The Wellness Community, Walnut Creek CA
For more information visit their website www.carcinoid-net.org
Or contact Jeanette Shaffner at cancerfighter@sbcglobal.net
Northern California Neuroendocrine Cancer Fighters (NCNCF)
A support group for carcinoid/NET survivors, their caregivers, family and friends. We gather for information, sharing of experiences, and support of one another. We meet every month on the second Saturday of the month from 1::00 to 5:00 PM. To learn more about our meeting schedule and NCNCF's online support group, go to: http://health.groups.yahoo.com/group/NCNCF/
For further information and meeting dates contact:
Kathy Arbanasin karbanis@yahoo.com
To join the e- list for Northern California - NCNCF-subscribe@yahoogroups.com
Photo Credit: Carol-Ann Wilson
California Carcinoid Fighters (CalCF) South Bay (Los Angeles)
This support group meets 1st Sat. of every month
10:30 a.m. until 12:30 p.m..
The Wellness Community- South Bay Cities
109 West Torrance Blvd.
Redondo Beach, CA 90277
Spouses, friends, family, caregivers, etc. all invited.
If interested in joining or for further information please email:
Patricia.A.Gerenday: carcinoidfighter@yahoo.com or
Bisc Deenihan: bisc13@aol.com
Colorado
Colorado Carcinoid Cancer Support Group
A support/advocacy group started in 2008 to share experiences and information, to network, to educate health care providers, and spread public awareness of carcinoid/NETs. For more information contact::
Lesley Stabinsky Compton PhD ronnierc1@msn.com
Connecticut
Connecticut Carcinoid Initiative (CCI)
A support/advocacy group started in 2004 to serve as a support group, to share experiences and information, to network, to educate health care providers and spread public awareness. Our future meetings will be bimonthly on the second Sunday of the month. For those of you who like to plan ahead, the 2008 meeting dates are:June 8; August 10; October 12; and December 14 For more information contact: Patricia Strong, pstronglaw@aol.com. or visit their website www.ctcarcinoid.org
New England Carcinoid Connection, Inc. (NECC)
Asupport group (non-profit organization)has been formed covering six New England states: Connecticut, Maine, Massachusetts, New Hampshire,Vermont and Rhode Island .
Their main mission is to spread awareness, provide education and support to carcinoid./NET patients and their families. For more information visit their web site http://www.carcinoid-newengland.org/
or contact: Anita O'Brien at
nitaobrien@comcast.net Nancy Hawkins at ndhawk@suscom-maine.net
Delaware
It's All About The Stripes Delaware Valley Carcinoid & NET Connection (Philly Connection) A new group supporting carcinoid and neuroendocrine tumor patients and their advocates with the opportunity to join others to gather information and share experiences.This group serves the Delaware Valley which encompasses Philly and the five surrounding counties, Northern Delaware, and southwestern NJ.(New Jersey communities nearby Philadelphia are welcome and encouraged to attend.)
For meeting schedule and location visit their website http://www.phillycarcinoid.org/
For more information contact Suzi F. Garber (Founder, patient and advocate) at info@phillycarcinoid.org
District of Columbia
Capital Area Carcinoid Survivors (CACS) A patient-run support group formed in September 2001 for Washington District of Columbia, Maryland, Virginia, West Virginia and eastern USA. Patients, their families and friends meet monthly on Saturday 10 a.m. to 12 noon.
Florida Carcinoid Support Group
An informal support group.
If you are interested in joining please email:
Pam Powel: prpowell@cfl.rr.com
Georgia
Metro Atlanta Carcinoid Awareness Group ( MACAG) This Group is intended as a communications enabler for those afflicted with Carcinoid cancer who reside in the Metro Atlanta area of Georgia. Family members and oncologists are also welcome. This group's mission is to increase carcinoid awareness within the Metro
Atlanta Areaand the state of Georgia. The group utilizes the YahooGroups
membership capability for group communication.
Those interested in joining the Group may send an email request to their E-list .MACAG-owner@yahoogroups.com. Informal meetings are facilitated quarterly with dates, times, and locations maintained on the group calendar.
Please contact
Mack Caudill (770-831-4519) jmcstc@aol.com or
Patty Howard (770-893-6073) nphoward@tds.netfor additional information or visit the web site at http://health.groups.yahoo.com/group/MACAG
Idaho
Pacific Northwest Carcinoid Support Group
This support group include members from Vancouver, British Columbia, Idaho,Washington , Oregon and neighboring states or other Canadian provinces without a support group. Meetings are usually held twice a year on a Saturday in Issaquah (east of Seattle)
For more information contact
Corie Dean at cadean@natpipe.com
Illinois
Chicagoland Carcinoid Fighters
This support group for Chicagoland area Carcinoid cancer and Neuroendocrine tumor patients is scheduling their meetings monthly, on the third Saturday. For more information about this group and meeting dates and location visit their web sitehttp://www.freewebs.com/chicagocarcinoi or contact: Kim Darrow at kim_darrow@hotmail.com
Indiana
Indy Carcinoid Awareness Network (ICAN)
I.C.A.N. Comes alive
ICAN Kick-Off: Our Indy Carcinoid Kick-Off meeting will be July 19, 2008!
Place: The Wellness Community of Central Indiana 5150 W 71st Street
Indianapolis, IN 46268
Meetings:
will then be held on the third Saturday of each month from 10 am to 12 noon.
Group Leader: Kari Jones - Carcinoid Cancer Survivor
Email: groupleader@indycarcinoid.org
To learn more about this new support group........visit their website
Capital Area Carcinoid Survivors (CACS)
A patient-run support group formed in September 2001 for Washington District of Columbia, Maryland, Virginia, West Virginia and eastern USA. Patients, their families and friends meet monthly on Saturday 10 a.m. to 12 noon.
For more information about CACS activities visit their web site: http://members.cox.net/cacsva/index.htm
To contact Bea Lehming at blehming@cox.net
or
Al Simms ASimmsJr@aol.com.
Massachusetts
Carcinoid and Neuroendocrine Tumor Seminar/Support Group At Dana-Farber Cancer Institute
44 Binney Street
Boston, MA, 02115
(Unless otherwise noted)
Two-part sessions offering an informational seminar for patients and families, followed by a support group for patients and a separate concurrent support session for family members. Registration is required. For more information,
call Jackie Denmon (617) 632-4235
or
Nathaniel Lamkin, MS, LICSW (617) 632-4349
New England Carcinoid Connection, Inc. (NECC)
Asupport group (non-profit organization) covering six New England states: Connecticut, Maine, Massachusetts, New Hampshire,Vermont and Rhode Island .
Their main mission is to spread awareness, provide education and support to carcinoid./NET patients and their families. For more information visit their web site http://www.carcinoid-newengland.org/
or contact:
Anita O'Brien at nitaobrien@comcast.net
Nancy Hawkins at ndhawk@suscom-maine.net
On June 16, 2006 the New England Carcinoid Connection (NECC)conducted a one day conference in Randolph, MA with key speakers Drs. Judah Folkman and Matthew Kulke. It was a memorable and very informative conference attended by more than 100 patients and caregivers. Thank you for a job well done.
To view a slide show from this special event CLICK HERE
Michigan
Michigan Carcinoid Group (MCG)
The main theme of this support group is "Sharing Information, Caring for Each Other "
We now have over 70 members and typically have 30-40 attendees at our "every other month" meetings.
Minnesota Carcinoid Cancer Support (MnCCS)
This support group was formed in September 1999. The purpose of this group is to help members manage their lives, cope with emotional and other issues, and educate themselves. Their goal is to offer a safe and confidential environment and to do so by providing non-judgmental support.
For meeting schedule and more information, please
contact:
Rachel at gjrzfisher@msn.com
Jan at jaxon7@msn.com
Long Island Chapter Carcinoid Cancer Awareness Network, Inc.(CCAN)
(Initiated by the LI-NY Carcinoid Support group) Their main mission is to spread awareness of carcinoid and related NET cancers among the general public and the medical community. This very active support group is conducting frequent support group meetings, patient and physician symposiums and fundraising events to support all their missions. This group is incorporated and is a 501(c) (3) non-profit organization and donations are welcome.
Western NY Carcinoid Support Group NEW Support group covering upper NY State.
To get more information about this group, their, mission, meeting place and dates, visit their website www.wnycarcinoid.org
or contact Betsy Ambrose at betsy@wnycarcinoid.org
Hampton Road VA Carcinoid/NET Support Group
An informative educational group focused on carcinoid and other neuroendocrine tumors and cancers consists of individuals and organizations from the patient, advocacy, and medical communities throughout Hampton Roads, which is also known as Tidewater. Friends and family of patients with these tumors and cancers seeking support are encouraged to join.
Please contact: HRVaCarcinoidGrp@yahoo.com for more information
South Carolina
Noids in the Carolinas NEW support group. To join an learn more about this group contact
Debra Austin at noidsinthecarolinas@gmail.com
Ohio
Ohio NOID Support Group
The Ohio support group holds meetings on a monthly basis, generally the third Saturday of every month in Westerville, OH, to provide support to carcinoid patients and caregivers. The format is very informal and provides the opportunity to share and discuss medical histories, treatments and promotes emotional support in dealing with this disease.
For more information contact:
Gayla Preston at lotuslipz2002@yahoo.com
Jayne Beck at mstoast@msn.com
Oregon
Pacific Northwest Carcinoid Support Group(PNW) - Oregon Chapter
For more information about this group contact:
Contact Corie Dean cadean@natpipe.com or
Kari Brendtro kbrendtro@yahoo.com
For more information about the PNW support group go to the information for Washington state.
Zebra by Joanne Barnum
A new group supporting carcinoid and neuroendocrine tumor patients and their advocates with the opportunity to join others to gather information and share experiences. This group serves the Delaware Valley which encompasses Philly and the five surrounding counties, Northern Delaware, and southwestern NJ. (New Jersey communities nearby Philadelphia are welcome and encouraged to attend.)
For meeting schedule and location visit their website http://www.phillycarcinoid.org/
For more information contact
Suzi F. Garber (Founder, patient and advocate) at
info@phillycarcinoid.org
PENNSYLVANIA CARCINOID CANCER ADVOCACY NETWORK (PCCAN) An advocacy group for carcinoid cancer and neuroendocrine tumor patients and caregivers, with a focus on support and education.
For more information contact:
Teresa Lanza, MSW
3831 Mark Ave.
Harrisburg, PA 17110 website: www.pccan.net
email: support@pccan.net phone: (717) 576-5095
Austin/San Antonio (updated July 2009)
The Centex Carcinoid Fighters Group(CCFG)
This support group meets bi-monthly, serving members from
Austin, San Antonio and surrounding areas. Meetings alternate between Austin and San Antonio.
For more information contact:
Jude Filler at judefiller@hotmail.com or call 512-472-7224
Dallas
Carcinoid Cancer Texas Survivors (CCTS)
The purpose of CCTS is to offer support and education and
to increase awareness of carcinoid cancer and carcinoid
cancer survivorship within the general and medical community.
This support group meets at Baylor Medical Center, Downtown Dallas,
TX.
Everyone welcome! For more information and meeting
schedule visit their
web site
or
contact
:
Carol-Anne Wilson at: CarolAnne52@gmail.com
Houston
Houston Area Carcinoid Support Group ( HACSG) A support group for Houston area carcinoid cancer patients and their caregivers. Meetings are quarterly.
Contact: Jan Peine (pronounced "piney") carcinoid@comcast.net
San Antonio
San Antonio Carcinoid Cancer Support Group (SACCG)
This group is affiliated with the Centex group based in Austin, TX
For more information contact:
Catherine Jett at datchij@yahoo.com
West Texas
Midland, Odessa, Lubbock, Abilene, and San Angelo
Contact:
Sarah Rees sarahjanerees@yahoo.com
Capital Area Carcinoid Survivors (CACS)
A patient-run support group formed in September 2001 for Washington District of Columbia, Maryland, Virginia, West Virginia and eastern USA. Patients, their families and friends meet monthly on Saturday 10 a.m. to 12 noon.
For more information about CACS activities visit their web site: http://members.cox.net/cacsva/index.htm
To contact Bea Lehming at blehming@cox.net
or
Al Simms ASimmsJr@aol.com.
Mid-Atlantic Carcinoid-Neuroendocrine Tumor Association (MACNETA)
The MACNETA group is for patients with Carcinoid Cancer and/or other Neuroendocrine Tumors, family members, friends, physicians, and other medical professionals.
The group is run by volunteers and has ties with Dr. Arthur Vinik of the Eastern Virginia Medical School Endocrine Center, NET Physician Teams, and Physicians. Support group meetings are held the 3rd Sunday of every other month from 2-4 pm in the Health Education Center at Sentara Virginia Beach General Hospital, Virginia Beach, VA
For more information please contact one of the following:
Susie Miller cw-susie1@cox.net
Dina Bolshazy westie01@cox.net
Susan Burke sburke76@yahoo.com
or visit their website. http://macneta.org/
Hampton Road VA Carcinoid/NET Support Group
An informative educational group focused on carcinoid and other neuroendocrine tumors and cancers consists of individuals and organizations from the patient, advocacy, and medical communities throughout Hampton Roads, which is also known as Tidewater. Friends and family of patients with these tumors and cancers seeking support are encouraged to join.
Please contact: HRVaCarcinoidGrp@yahoo.com for more information
Washington
Pacific Northwest Carcinoid Support Group
This support group include members from Vancouver, British Columbia, Idaho, Washington, Oregon and neighboring states or other Canadian provinces without a support group. Meetings are usually held twice a year on a Saturday in Issaquah (east of Seattle)
For more information contact
Corie Dean at cadean@natpipe.com
Washington, DC, Maryland, Virginia, West Virginia
Capital Area Carcinoid Survivors (CACS)
A patient-run support group formed in September 2001 for Washington District of Columbia, Maryland, Virginia, West Virginia and eastern USA. Patients, their families and friends meet monthly on Saturday 10 a.m. to 12 noon.
For more information about CACS activities visit their web site: http://members.cox.net/cacsva/index.htm
Or contact Bea Lehming at blehming@cox.net
or
Al Simms ASimmsJr@aol.com.
Australian Carcinoid Blog
There are few "patient-friendly" sites in Australia, that provide informational service for people who are affected by carcinoid cancer. This site was created to fulfill this void, is intended to provide basic information regarding carcinoid cancer and is maintained by Brett Watson & Michelle Vincent.
Update on Eric. The latest and the greatest
Eric has been diagnosed and treated for a rare form of cancer- Carcinoid Cancer. The saga on this site chronicles his journey from the day when his enlarged liver was identified at ultrasound when investigating for a possible gall stone. It turned out to be one heck of a gall stone!
If you would like to have a look at what Eric is up to his blog is http://moonhaven.com.au/ericsstory/ . He is currently finishing his 4rth and final Lu-177 treatment as part of the study conducted by Prof Harvey Turner at Fremantle Hospital WA with reasonable good results.
Eric & Leonie Gully moon haven’s founders
moon haven
cnr bottrill st & bussell hwy
Cowaramup
Western Australia
www.moonhaven.com.au
Phone: +61 (08) 97 555 470
Freecall: +61 1800 005 059
Canada
Carcinoid-Neuroendocrine Tumour Society–Canada
(CNETS-Canada)
To all Carcinoid fighters, their support persons who live in Canada, and in areas near the border, including Upper New York State, as well as any passing through; this support group gives an opportunity for fellowship, round table discussions, and information sessions regarding Carcinoid.
For information about our next support group meeting please email: Maureen Coleman at maureenc@sympatico.ca
To join Canadian discussion group Carcinoid-NETS-Canada
A Listser/Website dedicated for Canadians and their Neuroendocrine System illnesses
To Join CLICK HERE .
Wendy Gillis talks to the CNETS group October 2006
For part 1 Click Here
For part 2 Click Here
There are many new support groups formed in Canada. CLICK HERE for contact information
Germany
BS NET e.V.
Neuroendocrine Tumor/Carcinoid Support Group
(at the moment only in German)
Netherlands
Dutch Carcinoid Support Group
This group is a section of the "Stichting Doorgang" for cancers of the gastrointestinal track. For additional information please contact:"Jan Zuidema" Zui.Ver@inter.nl.net or "Teun Elemans" ltn@euronet.nl or visit the web site
www.kankerpatient.nl/doorgang/. ( Note: this web site is in Dutch )
Norway
CarciNor
CarciNor (the Carcinoid patients association in Norway) aims to act as a
support for patients suffering from hormone producing tumors in the
stomach, such as carcinoids, endocrine pancreatic tumors, adrenocortical cancer etc. The association also works to spread information about these diseases treatments, research methods and other matters of interest. CarciNor is affiliated to The Norwegian Cancer Society
To know more about this group you may want to visit their web site (på Norsk), (website in English) review their Information brochure or read their member news letter "CarciNor-Nyhetsbrev"
(Note: information is presently only available in norwegian)
Email contact information: post@carcinor.no
Singapore
NEW -- CNETS Singapore
An association of patients, caregivers and physicians, promoting better understanding of carcinoid and neuroendocrine cancer,
a relatively rare disease which is poorly understood and is often misdiagnosed.
Welcome to the website of Carcinoid & Neuroendocrine Tumor Society. This website is operated by CNETS Singapore, and is intended to serve the Asia Pacific community of patients, family caregivers and physicians.
For more information about this amazing website CLICK HERE
or contact William Claxton at williamc@itr8.com
This site contains many important carcinoid cancer and NET related articles by Professor Kjell Öberg and research team. (In both Swedish and English)
Carpa vidarebefodrar frågor till Sektionen för Endokrinologisk Onkologi i Uppsala.
Carpa forwards questions of medical character to the Section of Endocrine Oncology in Uppsala
Help and Support for those with 'The Quiet Cancer' A state of the art website providing not only information but also a moderated patient forum so that patients can ‘talk’ to each other. One of the problems facing NETs patients is a feeling of isolation. Unlike, say breast cancer patients, a NET patient might not find many others in his or her immediate area going through the same experience
We are a new charity and this is a brand new website for people diagnosed with neuroendocrine tumours, and it is still a work in progress.
We have included many pages of information about the disease, its diagnosis and treatment and links to other sites where you can find trusted information. There are a host of patients’ stories to read, and you can learn more about some exciting fund raising initiatives
New England Carcinoid Connection, Inc. (NECC) 
It's All About The Stripes 
Carcinoid Survivors (CACS)
Chicagoland Carcinoid Fighters
Capital Area Carcinoid Survivors (CACS)
Michigan Carcinoid Group (MCG)
Long Island Chapter
Dallas 
Eric & Leonie Gully
Maureen Coleman at 
Carcinoid Patient's Association (CARPA)