Connecting: Carcinoid Support Groups and Resources
You can find a wealth of information about carcinoid syndrome via the Internet. While many sites provide useful information, not all of the information on the Internet is reliable. On this page, you'll find a listing of helpful websites for further information, as well as links to carcinoid syndrome support groups:
Carcinoid Syndrome Information
Your health care provider is your first source of information because he or she understands your individual medical needs. Still, the Internet can be a good source of information about carcinoid syndrome, and it provides a way for patients and families to "talk" with one another, and share feelings and resources.
American Cancer Society, Inc.
A complex and expansive website helpful for those that have recently been diagnosed with cancer. The American Cancer Society (ACS) provides cancer information services; holds meetings and conferences; provides support for cancer patients, friends, family and survivors; and much more.
www.cancer.org or call 800-227-2345Cancer Care, Inc.
CancerCare is a national nonprofit organization that provides free professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs - including counseling, education, financial assistance, and practical help - are provided by trained oncology social workers and are completely free of charge.
www.cancercare.org or call 800-813-HOPE for information about support programsCarcinoid Cancer Foundation, Inc.
The Carcinoid Cancer Foundation, Inc. is a nonprofit organization chartered by the State of New York in 1968 for the purpose of encouraging and supporting research and education on carcinoid tumors and related neuroendocrine tumors (NETs).
www.carcinoid.org or call 212-722-3132NETumorAdvisor.org
Provides basic information on neuroendocrine disorders. The section on carcinoid tumors discusses diagnosis, treatment options, and information about enrolling in a clinical trial.
National Cancer Institute (NCI)
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). The NCI, established under the National Cancer Act of 1937, is the Federal Government's principal agency for cancer research and training.
www.nci.nih.gov with valuable information at a section of the site called "CancerNet" or call Information Services: 800-4-CANCER. National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Carcinoid Syndrome Support Groups
Joining a carcinoid support group can help you deal with carcinoid syndrome and interact with people who are going through similar experiences. Support groups share the latest treatment information, personal stories, and ways to get support for overcoming a disease. If you are interested in joining a carcinoid support group, a list of groups and their websites is provided below. Although Internet addresses change from time to time, current carcinoid sites include:
Carcinoid Cancer On-Line Support Group
A non-moderated e-list with strong emphasis on support in addition to medical information.
Carcinoid Cancer
Susan Anderson, a carcinoid tumor and carcinoid syndrome survivor, has compiled a comprehensive and inspiring site that includes her personal story, as well as much useful information about treatments, the disease, and organizations and conferences focusing on carcinoid syndrome.
Capital Area Carcinoid Survivors (CACS)
A patient-run support group formed in September 2001 for patients and caregivers in DC, MD, VA, and the eastern U.S. who are dealing with Carcinoid Cancer and Carcinoid Syndrome.
Metro NY Carcinoid Support Group (MNYCSG)
Formed in the fall of 2001 as a support group for New York, New Jersey and Connecticut. The group gathers twice a year as a regional group to attend the Carcinoid Cancer Foundation's seminars. These seminars include presentations by informative speakers, knowledgeable in various areas of the disease. The remainder of the year, members of local chapters gather information, promote understanding of carcinoid syndrome, and support each other.
San Gabriel/San Fernando Valley Carcinoid Fighters
This support group is free and will provide networking, support, and education to those affected by this disease. The group will meet once a month at the hospital.
www.glendaleadventist.com/content/news/2002/0816_carcinoid_cancer.asp or call (818) 409-8198.
Connecticut Carcinoid Initiative (CCIs)
Support group in Connecticut that meets once a month to discuss new developments in carcinoid research, to serve as a support group, to share experiences and information, to network, and to create health care provider and public awareness.
www.carcinoid.org/support/webpages/BobGetmanLymeArticle.htm or call 860-434-2682.
Boston Carcinoid Support Group
The Carcinoid and Neuroendocrine Patient Support Group meets at Smith Building at the Dan-Farber Cancer Institute. The group is run in a two-part session offering an informational seminar for patients and families, followed by a patient support group.
research.dfci.harvard.edu/neuroendocrine/contact/index.php or contact the support group coordinator at 617-632-5136.
Carcinoid Cancer Texas Survivors (CCT)
The mission is to educate carcinoid patients, physicians, and the general community with regard to Carcinoid Cancer and to offer a forum for positive and empathetic support. 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 communities.
Carcinoid Cancer Awareness Network (CCAN)
The Carcinoid Cancer Awareness Network is a non-profit organization incorporated in July of 2004, to intensify awareness of carcinoid cancer and to assist support groups around the world in providing patients and caregivers access to important information about carcinoid disease.
Support~Education~Awareness (SEA4Carcinoid)
This southern California support group provides a forum for sharing, caring, and learning in a safe, empathetic environment. SEA provides educational presentations aimed at improving understanding of neuroendocrine disorders and methods to improve quality of life. The group meets the third Saturday of each month in Glendale, California. www.SEA4Carcinoid.com or e-mail SEA4carcinoid@msn.com.
