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:
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Your healthcare 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.
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 800-227-2345
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 programs
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. Focused on awareness, education and support, this New York based group supports patients and groups across the USA and abroad.
www.carcinoidawareness.org or call 866-850-9555
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 888-722-3132
The mission of the Caring for Carcinoid Foundation is to discover a cure for carcinoid and related neuroendocrine tumors. The Caring for Carcinoid Foundation funds leading scientists, whose research will advance the understanding of neuroendocrine tumors, with the goal of curing these diseases. Along with its focus on research, the Caring for Carcinoid Foundation is committed to supporting patients, families, friends, and caregivers by providing them with complete and up-to-date information. For more information on the Caring for Carcinoid Foundation's supportive resources please visit:
www.caringforcarcinoid.org or call 617-848-3977
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.
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:
The Carcinoid and Neuroendocrine Patient Support Group meets at Smith Building at the Dana-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 or contact the support group coordinator at 617-632-5136
Cancer Adventures is a non-profit founded by a metastatic cancer survivor, dedicated to educating about prevention and early detection, as well as quality of life and the importance of living life with purpose and giving back to the community.
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.
Susan Anderson, a survivor of both carcinoid tumor and carcinoid syndrome, has compiled an 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. The site also provides a link to support groups in various areas of the country.
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.
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