Directory

Saturday, March 16, 2013 from noon to 2:00 pm is the next meeting of The Gulf Coast NET Support Group.  The group meets quarterly on Saturdays from noon to 2:00 pm and lunch is generally provided.  All are welcome! 

Meet with others dealing with carcinoid (themselves or a family member) in a casual, informal setting.  Please feel free to join us.  Meetings are held every second Saturday of the month from 1 to 3 pm.  Park in the rear lot of the Wellness Center.  For more information and meeting dates, contact Marilyn Burke.

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. The Center's phone number is 501-622-2100.

South - San Diego liaison

This support group meets the first Saturday of every month from 10:30 am until 12:30 pm. Meetings are held at 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 Gerenday or Bisc Dennihan.

This 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 second Saturday of each month from 1:00 to 4:00 PM at Kaiser Permanente Medical Center.

This new group meets the 4th Thursday of each month from 12:00 noon to 2:00 pm.  Parking is validated in lots 1, 2, and 6.  A complimentary light lunch is served.  The format of each meeting is a guest speaker followed by Q & A and group sharing.  The November group will meet on Thursday, November 15, 2012 due to the Thanksgiving holiday.  There is no December meeting and the group will resume meetings in January 2013 on the 4th Thursday.  The group is co-facilitated by Cynthia Coffelt, LSCW, MPH and Hong Zhou, NP.

Northern Californians fighting carcinoid and related neuroendocrine cancers. We support one another through sharing of experiences. We exchange information about treatments, doctors, patient conferences, clinical trials, and more.

Please join us at one of our support meetings. We meet informally from 1:00 to 4:00 PM on the second Saturday of every month.

On odd numbered months we meet at: O'Connor Hospital, 2105 Forest Ave., San Jose CA 95218.
On even numbered months we meet at: 1775 Nephi Drive, Fairfield, CA 94533. Sometimes we have a featured speaker.

To join the e-list for Northern California - NCNCF, subscribe@yahoogroups.com

Photo by Carol-Anne Wilson

Our mission is to help those with carcinoid and other neuroendocrine tumors to share challenges and experiences, learn about prognosis and treatments, find information, and improve communications between the medical community and patients. At most meetings there is a guest speaker with networking that is therapist facilitated. Meetings are held every first Saturday of even months (effective June 2011) from 1-4 pm at the Cancer Support Community in Walnut Creek, 925-933-0107.

A support/advocacy group started in 2008 to share experiences and information, to network, to educate healthcare providers, and spread public awareness of carcinoid/NETs.

A support/advocacy group started in 2004 to serve as a support group, to share experiences and information, to network, to educate healthcare providers and spread public awareness. Meetings are held bimonthly on the second Sunday of the month.  Pictured is CCI's cookbook, Bon Appetit -- A Collection of Recipes by The Connecticut Carcinoid Initiative.

A patient-run support group formed in September 2001 for patients and caregivers in Washington, DC; Maryland; Virginia; and the eastern USA who are dealing with carcinoid cancer and carcinoid syndrome.

Patients, their families, and friends meet on the second Saturday of each month from 10 a.m. to 12 noon at Life With Cancer Family Center in Fairfax, Virginia.

For information call Bea Lehming, 703-255-0519
(blehming@gmail.com) or Mitch Berger, President, 301-587-2396 (mitchmberger@msn.com).

An informal 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. The group also welcomes family members and medical professionals who wish to share information with MACAG members. Members are encouraged to attend an informal quarterly meeting. The meeting is intended to enable members to meet each other and exchange information.  This group's mission is to increase carcinoid awareness within the Metro Atlanta Area and the state of Georgia. MACAG utilizes the YahooGroups membership capability for group communication. Those interested in joining the group may send an email request to their E-list at MACAG-owner@yahoogroups.com. 

In addition to the contact information for Mack Caudill and Michael Rosenberg below, questions about the support group, meeting dates, etc. can also be directed to Patty Howard, nphoward@tds.net.

Pictured below is the 2012 Proclamation from Georgia's Governor Nathan Deal declaring November 10 as NET Cancer Awareness Day.

This Chicagoland area carcinoid cancer and neuroendocrine tumor support group holds meetings on the third Saturday of every month from 10 am to 12:30 pm.

 
The Indy Carcinoid Awareness Network is Indiana’s only carcinoid support group. We are here to support those living with carcinoid cancer and neuroendocrine tumors in the Central Indiana region. Open to patients, caregivers, friends, and family - we are here for you! Each meeting will consist of group sharing of experiences and information. A great time to learn from each other and ask questions. Meetings are tentatively set for the third Saturday of each month from 10 am to 12 noon.

Welcome to our support group for carcinoid cancer patients, their family, friends, and caregivers. Whether you're having a good day or a bad day, we're here for you on your journey.  We are here to increase carcinoid cancer awareness, provide education, and support for patients with carcinoid cancer. Newly formed in February 2012, this is a wonderful resource for all in the carcinoid community who live in Iowa!!

A patient-run support group formed in September 2001 for Washington, DC, Maryland, Virginia, West Virginia and eastern USA. Patients, their families and friends meet on the second Saturday of each month from 10 a.m. to 12 noon at Life With Cancer Family Center in Fairfax, Virginia.

The Life With Cancer Family Center is located at 8411 Pennell Street, Fairfax, Virginia.

For information call Bea Lehming, 703-255-0519 or Mitch Berger, 301-587-2396.

The Lahey Clinic offers a number of support groups for patients with cancer and their families.  This group meets on the fourth Tuesday of each month. Please call Pam Reznick for more information or to register.

Two-part sessions offering an informational seminar for patients and their families, followed by a support group meeting for patients and a separate, concurrent support session for family members.  Registration is required.

A support group (non-profit organization) covering six New England states: Connecticut, Maine, Massachusetts, New Hampshire,Vermont and Rhode Island. Their mission is to provide awareness, education and support to the New England carcinoid/neuroendocrine community. Meetings are held on Wednesdays from 10:30am to 12 noon (even numbered months, 3rd Wednesday of the month only).

The main theme of this support group is "Sharing Information, Caring for Each Other."  MCG is a casual friendly group; all persons interested in carcinoid or NETs are welcomed. Specific suggestions for agenda items are encouraged. Meetings are held every other month.

Our support group was formed in September 1999 as an informational and educational support group for people with carcinoid and NET cancers. We meet at Fairview-Ridges Hospital in Burnsville, Minnesota, usually on the second Sunday of every other month (January, March, May, July, September and November) from 3 to 5 pm.  Our members are from all over Minnesota, North and South Dakota, western Wisconsin, and northern Iowa.  Families and friends are always invited and encouraged to attend.  

Please join our e-mail list for all up-to-date information on meetings, events, and news.  For more information, please contact Jan Jackson, Dick Burnson at 651-216-6230 or by email at bignorske2001@yahoo.com, or Larry McDermott.

We are a proactive group whose mission is to support a high quality of life for neuroendocrine cancer survivors and caregivers in the heartland of America!  Our current membership is located in Missouri, Kansas, Nebraska, Iowa, Oklahoma, Tennessee and even northern New York State! If carcinoid, islet cell or other neuroendocrine cancers have affected you or your family, you have come to the right place!  Meetings have been held in the Kansas City area, St. Louis area, and in Nebraska. Please email the group at: Heartland_Carcinoids@yahoo.com.

The New Jersey Carcinoid Cancer Network has been serving the NJ community since 2001, when we started as the NJ Chapter of the Metro New York Carcinoid Support Group. When the Metro group was formed, it was thought that because carcinoid and other neuroendocrine tumors were so rare, it would require a large geographic area to create a comprehensive group. With the advent of increased awareness, in part due to support groups, we are now able to provide a more localized group to better serve everyone. Our mission is to promote awareness of arcinoid and other NETs and to provide shared information to patients, caregivers and medical professionals to assist them in managing their disease, provide treatment and diagnostic options that may not be common knowledge. Meetings are typically held on the first Sunday of most months and run from 1:30 to 4:30 pm. Effective with the September 9, 2012 meeting, our group's new meeting location is the Woodbridge Main Public Library.

The Big Apple Noids is the newest New York support group, serving carcinoid/NET patients, caregivers, and friends in the greater New York City area and Westchester County.  Meetings are held on the 2nd Sunday of most months from 1 pm to 3 pm at the Riverdale Neighborhood House. For directions to the Riverdale Neighborhood House, call 718-549-8100 or visit their website.

Initiated by the Long Island NY Carcinoid Support Group, CCAN is a nonprofit charity whose mission is to intensify awareness of neuroendocrine tumors & carcinoid cancer in the medical community and general public around the world. CCAN also assists patients, caregivers and support groups worldwide by providing access to important & updated information about the disease.  This very active group holds regular meetings, patient and physician symposiums, and fundraising events, including an annual gala and a walkathon.  CCAN is a 501(c)(3) nonprofit organization and donations are welcomed.  Access video recordings of local and national carcinoid/NET patient and physician conferences from CCAN's website.

The purpose of this support group is to provide an opportunity for carcinoid patients, caregivers, friends, and medical professionals to get together and discuss the issues relating to carcinoid and other forms of neuroendocrine tumors. Together we will share our experiences and knowledge of the many treatment options that are available to carcinoid patients. The group meets quarterly from 2:00 - 4:00 pm.

To join and learn more about this group contact Karen J. Connell at nczebragirl12@aol.com or call 910-545-7513.

The Ohio support group holds meetings three or four times a year to provide support to carcinoid patients and caregivers. The meetings are very informal and provide the opportunity to share and discuss medical histories, treatments and promotes emotional support in dealing with this disease.

The group's next meeting is Sunday, June 9, 2013 from 2-5 pm.  All are welcome to bring a snack or beverage to share with the group.

For information about future meeting dates and times contact support group leader Greg Ziernicki at the email address or telephone number below.

Our support group meets 4 times a year from 1:00 pm to 4:00 pm on Sunday afternoons at a location in the greater Portland area.  The meetings are typically held in February, April, June, and October.  In addition, we always get together in December for a fun, social holiday event. 

At each meeting everyone has an opportunity to share his or her journey and is encouraged to bring anyone that is interested in learning more about carcinoid/NET cancers to join us.  It is our goal for everyone to learn something new at each meeting.  "We believe that getting together in person to support one another is beneficial to all!!"

Serving Philadelphia, surrounding counties, Southern New Jersey, and Delaware, this support group is dedicated to promoting awareness and advocacy. It is a bridge to resources, support, education and the medical community for carcinoid and other neuroendocrine tumor (NET) patients. For more information, visit their website at www.phillynets.org.

A support group (nonprofit organization) covering six New England states:  Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont.  Their main mission is to spread awareness, provide education, and support to carcinoid/NET patients and their families.  For more information, visit their website:  http://www.carcinoid-newengland.org.

You may write to them at: New England Carcinoid Connection, PO Box 366282, Boston, MA 02138-0024.

To join and learn more about this group contact Karen J. Connell at nczebragirl12@aol.com or call 910-545-7513.

The purpose of CCTS is to offer support and education to people living with, affected by or interested in carcinoid cancer. This support group meets the second Saturday of each month at Baylor University Hospital.

For more information and meeting schedule visit their website.

NEW!  This group is being formed as of May 2011 and welcomes carcinoid/NET survivors, family members, and caregivers.  Meeting location and dates will be decided by support group members.  Please contact the support group organizer and leader, Kathy Peoples, for more information.

Contact: Diane Thomas etthomas@juno.com

A support group for carcinoid cancer patients and their caregivers in the Houston area . Meetings are quarterly. For more information contact: Jan Peine (pronounced "piney") at carcinoid@comcast.net. 

This group is affiliated with the Centex Carcinoid Fighters Group (CCFG) based in Austin, TX. For more information contact: Catherine Jett at datchij@yahoo.com.

This support group meets on the fourth Saturday of even months, for those in the Austin and Central Texas area.

If you or a loved one has been diagnosed with carcinoid/NETs or have an interest in learning more, please join a new carcinoid support group in Utah.  Beginning March 13 from 6 - 8 pm and continuing to meet the second Wednesday of May, July, September and November at the Intermountain Medical Center Campus.  Please call Merlynn or Laurie Densley for information and  to register for this new support group.

A support group (nonprofit 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 website at http://www.carcinoid-newengland.org/ or contact Anita O'Brien at nitaobrien@comcast.net.

A patient-run support group formed in September 2001 for patients and caregivers in Washington, DC; Maryland; Virginia; and the eastern USA who are dealing with carcinoid cancer and carcinoid syndrome.

Patients, their families, and friends meet on the second Saturday of each month from 10 a.m. to 12 noon at Life With Cancer Family Center in Fairfax, Virginia.

For information call Bea Lehming, 703-255-0519
(blehming@gmail.com) or Mitch Berger, President, 301-587-2396 (mitchmberger@msn.com).

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

Areas served by MACNETA include: Chesapeake, Hampton, Newport News, Norfolk, Suffolk, Poquoson, Portsmouth, Virginia Beach, and Williamsburg.

This support group meets twice a year at a location in the greater Seattle area.  The Fall Meeting is in late October and the Spring Meeting is in late April, with meeting times of 2:00 pm - 4:30/5:00 pm.  Generally the meetings are roundtable discussions with guest speakers invited from time to time.

A support group which provide resources, support and information about carcinoid cancer and NETs (neuroendocrine tumors) within Australia.

For more information visit their web site at: http://www.carcinoid.com.au/

For additional information, please visit the carcinoid  patients blogs;

• Australian Carcinoid, maintained by Brett Watson and Michelle Vincent.
• Eric's Carcinoid Journey.

The Unicorn Foundation is the only Australian non-for-profit medical charity focused on neuroendocrine tumors.  Through the foundation, you can find support groups, get information about carcinoid and other NETs, and locate a wide variety of resources. Pictured is John Leyden, MD, founder and Chairman of the Unicorn Foundation. Visit their website here: http://www.unicornfoundation.org.au/.

To all carcinoid fighters, caregivers 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 their next support group meeting please email: Maureen Coleman at maureenc@sympatico.ca

To join the Canadian discussion group Carcinoid-NETS-Canada visit their web site at: http://ca.groups.yahoo.com/group/carcinoidnetscanada/ 

Netpa Denmark is an association for patients with neuroendocrine tumors (tumors) such as carcinoids, endocrine pancreatic tumors, neuroendocrine tumors in the lungs, etc. The association, founded by patients and relatives, is for also for families and friends of patients with these diseases and the staff who work with care and research in this area.

Its aim is to:

•     Inform about the disease

•     Be the voice of the authorities and institutions

•     Support research on the diseases and dissemination of research results.

For the Google Translate version of the website in English, click here.

This is a Neuroendocrine/Carcinoid support group in Germany.

For more information visit their website at: http://www.net-shg.de/, which is  in German.  You can use Google Translate to translate the site into another language.

Associazione Italiana Tumori Neuroendocrini (A.I.NET) was created to encourage research and treatment of neuroendocrine tumors; to raise awareness about these diseases; to provide the opportunity for meetings, debates, and conferences with highly specialized medical personnel; and to give hope to all living with NETs.

To contact the organization by mail, write to:

Adele Santini

Via Luigi Pianciani, 11

06036 Montefalco (PG)

NET-groep is the Dutch NET support group.  On their website you will find excellent videos, newsletters, a list of questions to ask your doctor, and much more. Their medical advisory board includes NET specialists from Erasmus MC, an ENETS Centre of Excellence for NETs. The group was featured in the January 2012 newsletter produced by Eurodis Rare Diseases Europe. Read the article here. (Note: this website is in Dutch. To view it into another language, click here for Google Translate.)

The Norwegian carcinoid/NET support group provides support and education for carcinoid/NET patients.

For more information visit their web site at: http://www.carcinor.no/ (only in Norwegian) or contact post@carcinor.no. To translate the site into other languages, click here for Google Translate. 

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.

Their website CNETS Singapore is intended to serve the Asia Pacific community of patients, family caregivers and physicians.

For more information contact William Claxton at williamc@cnets.org 

CARPA a Swedish association, features many important carcinoid cancer and NET related articles by Professor Kjell Öberg and his research team. Capra  welcomes families and friends, people who are involved in the treatment of patients, and those who focus on or who have an interest in research in the field of NET cancers. (In both Swedish and English).

A support group in the UK whose mission is to help and support people with MEN1 and MEN2.

For more information visit their website at: http://www.amend.org.uk/ or contact: Liz Dent at Liz.Dent@amend.org.uk
or
Clare Goldsmith at claregoldsmith@hotmail.com

A  website providing not only information but also moderate a 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 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. Please visit their website at http://www.netpatientfoundation.com/