Directory

Support Group Directory

United States

Arizona

Arizona Carcinoid Team (ACT)

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.

The Wellness Community of Central Phoenix
360 E Palm Lane
Phoenix, AZ 85004-1531
Contact: Marilyn Burke
Tel: 480-926-0035

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

Mercy Cancer Center
1455 Higdon Ferry Road
Hot Springs, AR 71913-6456
Contact: Terri Wright

California

California Carcinoid Fighters (CalCF) South Bay (Los Angeles)

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.

Contact: Patricia Gerenday
Contact: Bisc Deenihan
Kaiser Carcinoid Support Group

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.

Kaiser Permanente Medical Center
1600 Eureka Boulevard MOB D-- 3rd Floor, Meeting Room 1
Roseville, CA 95661
Contact: Toni Hussain
Los Angeles Carcinoid Neuroendocrine Tumor Support (LACNETS)

The LACNETS 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 group is co-facilitated by Cynthia Coffelt, LSCW, MPH and Hong Zhou, NP.

Dr. Martin Allen-Auerbach from UCLA Nuclear Medicine will be the guest speaker on September 25, 2014, discussing "Imaging of Neuroendocrine Tumors," including the Gallium 68 scan.  For more information and reservations, click here.

The next group meeting will be held on October 23, 2014 and includes a wrap up of the 2014 National NET Patient Conference, sponsored by the Carcinoid Cancer Awareness Network.

Jan Naritomi-Hart Celebration of Life Slide Show http://youtu.be/WJE3HNW9pTQ

Presentation at LACNETS meeting by Dr. Eric Liu, carcinoid/neuroendocrine tumor specialist: http://youtu.be/pNms2-9r9ss

Samuel Oschin Cancer Center, Cedars Medical Center
8700 Beverly Boulevard
Los Angeles, CA 90048
Contact: Giovanna Imbesi
Tel: 310-399-2800
Northern California Neuroendocrine Cancer Fighters (NCNCF)

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

Contact: Kathy Arbanisin
Northern California Carcinoid Neuroendocrine Support Group (NorCal CarciNET -- 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, 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.

Cancer Support Community (formerly The Wellness Community)
3276 McNutt Avenue
Walnut Creek, CA
Contact: Josh Mailman
San Diego/Orange County Carcinoid/NETs Support Group

Colorado

Colorado Carcinoid Cancer Support Group

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.

Contact: Lesley Stabinsky Compton, PhD

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 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.

Wethersfield Public Library
515 Silas Deane Highway
Wethersfield, CT 06109
Contact: Patricia Strong

District Of Columbia

Capital Area Carcinoid Survivors (CACS)

A patient-run support group formed in September 2001 for NET patients and caregivers in Washington, DC; Maryland; Virginia; and the 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 remainder of the 2014 meeting dates are: October 18 (3rd Saturday), November 15 (3rd Saturday), and December 13.  Coffee and morning refreshments are served.

The Bea Lehming Memorial Lectures brings internationally known experts to speak on Saturday, November 15, 2014.  This free lecture, designed for patients and physicians, will feature Thomas M. O'Dorisio, MD, "Factors to Consider in Making Treatment Choices" and M. Sue O'Dorisio, MD, PhD, "My Child Has a NET: What Role, if Any, Does Genetics Play?".  For more information and to register, click here.

For information call Mitch Berger, President, 301-587-2396 (mitchmberger@msn.com).

Contact: Mitch Berger

Florida

Florida Carcinoid Support Group

An informal support group.

Contact: Pam Powell

Georgia

Metro Atlanta Carcinoid Awareness Group (MACAG)


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

 

Metro Atlanta Carcinoid Awareness Group (MACAG)

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

Georgia Governor Nathan Deal declares November 10, 2012 as NET Cancer Awareness Day

Cancer Support Community Atlanta
5775 Peachtree Dunwoody Drive Building C, Suite 225
Atlanta, GA
Contact: Mack Caudill
Tel: 770-831-4519
Contact: Michael Rosenberg
Tel: 404-431-0100

Illinois

Chicagoland Carcinoid Fighters

The Chicagoland area carcinoid cancer and neuroendocrine tumor support group meets the second Saturday of every month from 10 am to noon.

The Wellness House
131 N County Line Road
Hinsdale, IL 60521
Contact: Kim Darrow

Indiana

Indy Carcinoid Awareness Network (ICAN)

 
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. We also regularly show videos from patient conferences as an education tool. A great time to learn from each other and ask questions. Meetings are  set for the third Saturday of each month (excluding December) from 10 am to 12 noon.

The Cancer Support Community of Central Indiana
5150 W 71st Street
Indianapolis, IN 46268
Contact: Mary Mitchell-Dick

Iowa

Iowa Carcinoid Cancer Connection

 

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!!

Contact: Jennifer Holm
Tel: 515-205-4565

Kansas

Kansas (see Missouri)

Louisiana

Louisiana Carcinoid/NET Support Group (LANETS)
Contact: Susan and David Connick

Maine

New England Carcinoid Connection (NECC)

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.

Contact: Nancy Hawkins

Maryland

Capital Area Carcinoid Survivors (CACS)

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 remainder of the 2014 meeting dates are: October 18 (3rd Saturday), November 15 (3rd Saturday), and December 13.  Coffee and morning refreshments are served.

The Bea Lehming Memorial Lectures brings internationally known experts to speak on Saturday, November 15, 2014.  This free lecture, designed for patients and physicians, will feature Thomas M. O'Dorisio, MD, "Factors to Consider in Making Treatment Choices" and M. Sue O'Dorisio, MD, PhD, "My Child Has a NET: What Role, if Any, Does Genetics Play?".  For more information and to register, click here.

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

 

Contact: Mitch Berger
Contact: Mitch Berger (President)
Tel: 301-587-2396

Massachusetts

Carcinoid Cancer Support Group

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.

Lahey Clinic
41 Mall Road 3 West Keriotis Conference Room
Burlington, MA 01805
Contact: Pam Reznick
Tel: 781-744-8113
Carcinoid and Neuroendocrine Tumor Seminar/Support Group at Dana-Farber Cancer Institute

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.

Contact: Jane Bausch, LICSW
Tel: 617-632-3309
Fax: 617-632-5603
New England Carcinoid Connection, Inc. (NECC)

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).

Needham Public Library
1139 Highland Avenue
Needham, MA 02494
Contact: Anita O'Brien
Contact: Nancy Hawkins

Michigan

Michigan Carcinoid Group (MCG)

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.

Faith United Church of God
I-96 and Walker Avenue
Grand Rapids, MI
Contact: Dave Vickery
Tel: 616-450-0842 (cell)
Tel: 616-447-8550 (home)

Minnesota

Northwood NETs Support Group

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.

Fairview-Ridges Hospital
201 East Nicollet Boulevard
Burnsville, MN 55337
Contact: Jan Jackson
Tel: (651) 454-7707
Contact: Larry McDermott
Tel: (763) 560-3948

Missouri

Heartland Carcinoids & NETs Support Group

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.

Contact: Linda Hickam
Tel: 316-990-0850

Nevada

Las Vegas Noids
Contact: Nancy Morris
Tel: 702-418-4280

New Hampshire

New Hampshire (see New England)

New Jersey

New Jersey Carcinoid Cancer Network (NJ-CCN)

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.

Woodbridge Main Public Library
1 George Frederick Plaza
Woodbridge, NJ 07095
Contact: Jim Weiveris
Tel: 609-812-9294
Contact: Judy Golz
Tel: 201-891-2259

New York

Big Apple Noids

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.

Riverdale Neighborhood House
5521 Mosholu Avenue
Bronx, NY 10471
Contact: Emily Zuckerberg
Tel: 917-689-1980 (cell)
Carcinoid Cancer Awareness Network, Inc. (CCAN)

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.

Contact: Maryann and Robert Wahmann
Tel: 516-781-7814
Tel: 866-850-9555
Western NY Carcinoid Support Group

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.

LDS Chapel
1400 Westfall Road
Rochester, NY
Contact: Betsy Ambrose
Tel: 315-597-1156

North Carolina

Noids in the Carolinas

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

Contact: Karen J. Connell

Ohio

Ohio Carcinoid Support Group

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.

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

Columbus Library - Whetstone Branch
3909 North High Street
Columbus, OH
Contact: Greg Ziernicki
Tel: 440-554-5938
Contact: Jayne Beck

Oregon

Pacific Northwest (PNW) Carcinoid Support and Advocacy Group - Oregon & SW Washington Chapter


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!!"

Contact: Kari Brendtro
Tel: 360-314-4112
Tel: 503-998-5813 (cell)

Pennsylvania

The Philly NETs

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.

Contact: Suzi Garber
Tel: 267-288-5642

Rhode Island

New England Carcinoid Connection, Inc. (NECC)

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.

Contact: Anita O'Brien
Contact: Nancy Hawkins

South Carolina

Noids in the Carolinas

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

Contact: Karen J. Connell

Texas

Amarillo Area Carcinoid Support Group
Contact: Lynda Barksdale
Carcinoid Cancer Texas Survivors (CCTS)

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.

Baylor University Hospital
3500 Gaston Avenue Meeting Rm. # 7
Dallas, TX 75246
Contact: Karen Sandlin
Tel: 972-669-1778
Tel: 214-505-4064 (mobile)
Corpus Christi Carcinoid Support Group

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: Kathy Peoples
Tel: 361-356-6975
El Paso Carcinoid Support Group

Contact: Diane Thomas etthomas@juno.com

Contact: Diane Thomas
San Antonio Carcinoid Cancer Support Group (SACCG)

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.

Contact: Catherine Jett
The Centex Carcinoid Fighters Group (CCFG)

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

Contact: Jude Filler
Tel: 512-472-7224

Utah

Utah Carcinoid Cancer Support Group

Utah Carcinoid Support GroupIf you or a loved one has been diagnosed with carcinoid/NETs or have an interest in learning more, please join the carcinoid support group in Utah. In 2014 meetings are scheduled for   the second Wednesday of January, March, May, July, September and November at the Intermountain Medical Center Campus from 6 - 8 pm.  Please call Merlynn or Laurie Densley for information and to register for this support group.

Intermountain Medical Center Campus
5131 South Cottonwood Street Building #3, 2nd Floor, South Conference Room
Murray, UT 84107
Contact: Merlynn or Laurie Densley
Tel: 801-558-0542 or 801-281-0036

Vermont

New England Carcinoid Connection, Inc. (NECC)

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.

Contact: Nancy Hawkins

Virginia

Capital Area Carcinoid Survivors (CACS)

A patient-run support group formed in September 2001 for NET patients and caregivers in Washington, DC; Maryland; Virginia; and the 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 remainder of the 2014 meeting dates are: October 18 (3rd Saturday), November 15 (3rd Saturday), and December 13.  Coffee and morning refreshments are served.

The Bea Lehming Memorial Lectures brings internationally known experts to speak on Saturday, November 15, 2014.  This free lecture, designed for patients and physicians, will feature Thomas M. O'Dorisio, MD, "Factors to Consider in Making Treatment Choices" and M. Sue O'Dorisio, MD, PhD, "My Child Has a NET: What Role, if Any, Does Genetics Play?".  For more information and to register, click here.

For information call Mitch Berger, President, 301-587-2396 (mitchmberger@msn.com).

Life With Cancer Family Center
8411 Pennell Street
Fairfax, VA 22031
Contact: Mitch Berger
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

Mid-Atlantic Carcinoid-NeuroEndocrine Tumor Association (MACNETA)

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

Contact: Susie Miller

Washington

Pacific Northwest Carcinoid/NET Support Group, Washington Chapter

This support group meets three times a year on a Saturday. Patients and caregivers share information about their own diagnostic and treatment experiences in order for all participants to be better informed about dealing with this cancer. New participants are always given the opportunity to share their situation and to ask questions of longer time/experienced patients.

On occasion speakers come to meetings and give presentations about carcinoid and PNET (pancreatic neuroendocrine tumor) cancer related to their own specialty and experience.  The next support group meeting is November 8, 2014.

The support group will present Carcinoid/NET Patient Education Day on Saturday, October 25, 2014 from 8:45 am to 4:30 pm at UW Medicine in Seattle, Washington.  Click here for the flyer, program agenda, and to RSVP.

Group Health Administration and Operations Campus (AOC)
12400 E. Marginal Way S.
Tukwila, WA 98168
Contact: Fran Sharp
Tel: 253-691-3773

Australia

Carcinoid Cancer Resources for Australians

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;

The Unicorn Foundation

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/.

Contact: Simone Leyden, CEO, Unicorn Foundation
Tel: +61 2 9904 1929

Canada

Carcinoid-Neuroendocrine Tumour Society–Canada (CNETS-Canada)

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 organization's support groups provide an opportunity for fellowship, round table discussions, and information sessions regarding carcinoid and NET cancer. 

For information about support group meetings, click here. Videos from past CNETS Canada conferences can be viewed here.

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

Contact: Jackie Herman
Tel: 416-848-3703

Denmark

Netpa Danmark

Netpa Danmark 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.

 

Tel: 47 52 71 13

Germany

BS NET e.V.

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.

Italy

Associazione Italiana Tumori Neuroendocrini (A.I.NET)

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)

Contact: Adele Santini
Tel: 346.6812742

Norway

CarciNor

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

Singapore

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.

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 

Sweden

Carcinoid Patient's Association (CARPA)

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). Click here for the English translation of the website.

United Kingdom

AMEND (Association for Multiple Endocrine Disorders)

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

Contact: Liz Dent
NET Patient Foundation: Incorporating Living With Carcinoid

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/