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 Society (LACNETS)

Beginning in July 2015, the LACNETS group will meet in its original location at Cedars-Sinai.  Meetings are held on the 2nd Tuesday of each month from 11:00 am to 1:00 pm. 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 facilitated by Hong Zhou, NP.

Videos from previous meetings can be seen here: https://www.youtube.com/channel/UCA99wbROUqMyzGyxqe1uzEg/videos

The August 11 meeting will feature Dr. Robert McKenna, Jr., Medical Director, Thoracic Surgery & Trauma at Cedars-Sinai Medical Center, talking about "The Role of Surgery for Neuroendocrine Lung Cancer."  Click here for a meeting flyer.

Cedars-Sinai Samuel Oschin Cancer Center
8700 Beverly Boulevard
Los Angeles, CA 90048
Contact: Giovanna Imbesi
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 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

The mission of our group is to provide support through group discussion and a mentoring program, to share challenges and experiences, to learn about prognosis and treatment options, to provide the latest information about the diagnosis and treatment of NETS including carcinoid tumors, and to facilitate access to resources for patients, families, friends and caregivers.  We share our experiences in a comforting, emotionally supportive and caring environment.

The next Patient Sharing and Support Meeting is scheduled for Saturday, August 15 from 10 am to 12 noon.  Click here for the meeting flyer and click here for directions.

San Diego Orange County Carcinoid/NETs Support Group

Contact: Judi Dedrick
Tel: 858-663-9966
Contact: David Van Bibber

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. Meetings are quarterly including an annual midwinter conference in February.

Contact: Cy Ball
Tel: 303-751-2678
Contact: Lela Selby
Tel: 303-694-2664

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 Sundays.  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.   Coffee and morning refreshments are served.

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
N.E.T. Hopefuls

NEW SUPPORT GROUP in 2015

Our Central Florida group believes education is the key for dealing with carcinoid cancer. We are here to support each other and share our experiences and information.  This is a non-denominational group and family members and medical professionals are welcome.  We meet the 2nd Wednesday of each month at 7:00 pm.

Hope Lutheran Church
250 Avenida Los Angelos
The Villages, FL 32162
Contact: Wanda Probst
Tel: 352-245-8095

Georgia

Georgia Neuroendocrine Tumor Support Group (MACAG)


The Georgia Neuroendocrine Tumor Support 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 and other neuroendocrine cancers. 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 neuroendocrine cancer 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) 2015_CCF website

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 Canman

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.   Coffee and morning refreshments are served.

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 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

Northwoods NETs Support Group

Northwoods 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, Dawn Marie Peterson, dawnmarie@northwoodsnets.org or Peter Fuglestad, petefug@gmail.com.

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

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 NETS

The Big Apple NETS 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 last Sunday of the month on the Upper East Side in Manhattan. For further information please contact Emily Zuckerberg.

Contact: Emily Zuckerberg
Tel: 917-689-1980 (cell)
Neuroendocrine Cancer Awareness Network, Inc. (NCAN)

Initiated by the Long Island NY Carcinoid Support Group, NCAN 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. NCAN 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.  NCAN 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 NCAN'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.

The next group meeting is scheduled for Sunday, August 16, 2015 from 2-5 pm at the Strongsville Public Library.  Click here for directions to the library.

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

Strongsville Public Library, Meeting Room B
18700 Westwood Drive
Strongsville, OH 44136
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

NEPA Zebra's (Northeast Pennsylvania Zebra's)

NEW SUPPORT GROUP AS OF MAY 2015 -- The NEPA Zebra's is a newly formed support group serving patients and family members in  Northeast Pennsylvania.  For anyone who would like to attend a future meeting, please contact Lori DeVoe,  group leader, for information about meeting dates, times, and locations. You can also join the group's new Facebook page: https://www.facebook.com/northeastpazebras?fref=ts.

 

Contact: Lori DeVoe
Tel: 917-513-3622
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 Texas Health Resources University from 11 am to 1 pm.

 

For more information and meeting schedule visit their website.

Texas Health Resources University
8194 Fogelson Lane Meeting Rm. # 114
Dallas, TX 75231
Contact: Karen Sandlin
Tel: 972-669-1555
Tel: 214-505-4064 (mobile)
Corpus Christi Carcinoid Support Group

This group 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
San Antonio Carcinoid Cancer Support Group (SACCG)

This group is affiliated with the Centex Carcinoid Fighters Group (CCFG) based in Austin, TX.

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 NET 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 NET support group in Utah. In 2015 meetings are scheduled for  the second Wednesday of every other month on January 14, March 11, May 13, July 8, September 9 and November 11 at the Intermountain Medical Center Campus from 6 to 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, North Conference Room
Murray, UT 84107
Contact: Merlynn or Laurie Densley
Tel: 801-281-0036 or 801-558-0542

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.   Coffee and morning refreshments are served.

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. 

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/

 

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

Belgium

vzw NET & MEN Kanker

vzw NET & MEN Kanker Belgium is the Belgian national organisation for and by NET and MEN patients. All board members are directly related to one of the diseases, either as a patient, or as a family member.

Franchommelaan 124 F6
8370 Blankenberge
Contact: Veronique De Graeve
Tel: +32 50 41 12 90
Tel: +32 471 21 77 54 (mobile)

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.

Netzwerk Neuroendokrine Tumoren (NeT) e. V.

The network NeT is the largest self-help organization for patients with neuroendocrine neoplasms and their families in the German-speaking world and one of the largest self-help groups for this disease in Europe.


Wörnitzstraße 115a
Nuremberg, 90449
Tel: 0911/2528999
Fax: 0911/2552254

India

Carcinoid and Neuroendocrine Tumour Society, India

Carcinoid and Neuroendocrine Tumor Society (CNETS) India is dedicated to carcinoid and neuroendocrine tumor patients, family caregivers, researchers and physicians. Based in New Delhi, India, CNETS India serves members throughout India and the Asia Pacific region.

The primary focus of the CNETS India is to establish an online helpline and resource for patients and caregivers all over India and South East Asia for medical advice.

The society also serves as a forum especially for patients, carers and family members of NET patients who need a support network to meet others who have had similar experiences and can provide reassurance and support.

The founders of CNETS India are a team of medical specialists working at reputed institutes across India with a special interest in management of carcinoid and neuroendocrine tumors. CNETS India has an advisory panel of specialist doctors with experience in managing NET patients.

Ireland

NET Patient Network

NET Patient Network was formed in 2012 to provide information and support services for NET patients in Ireland.

The primary purpose of NET Patient Network is to put Irish NET patients in touch with each other so that we can collectively help and support each other through living with our disease.  Both newly diagnosed as well as existing patients, some of whom have lived with NETs for many years, can get great benefit and comfort from interacting with and supporting each other.

Our first objective is to compile a list of all NET patients in Ireland. We want to give greater weight to your voice in dealing with the HSE and the medical establishment.

We have an annual NET Patient day where we gather NET patients and their families together with Irish and international doctors. On that day, we have presentations, group discussions, and questions and answers with experts in the field.

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/ (in Norwegian), CarciNor in English, http://www.carcinor.no/index.php/carcinor-in-english 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/. Contact AMEND here: http://www.amend.org.uk/about-us/contact-us.html.

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/