The American Association of Endocrine Surgeons, Patient Education Site

Neuroendocrine tumor advocacy groups

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1. North American Neuroendocrine Tumor Society

The North American Neuroendocrine Tumor Society (NANETS) is an organization which was founded for scientific and educational purposes in 2006. Their objectives are to develop and publish consensus guidelines outlining concrete strategies on appropriate neuroendocrine cancer management, to enhance public awareness of neuroendocrine cancer management, to enhance public awareness of neuroendocrine cancers by developing alliance with foundations, to network with similar international organizations, to increase representation of clinicians and research in the field of neuroendocrine cancer biology, to promote research in the area of neuroendocrine cancers, and to establish a neuroendocrine cancer registry.

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2. Carcinoid Cancer Foundation

The Carcinoid Cancer Foundation™ began as the Carcinoid Tumor and Serotonin Research Foundation in 1968 when NIH fund for rare cancers was terminated. The name was changed to the Carcinoid Cancer Foundation™ in 1995. It is a nonprofit organization chartered by the State of New York for the purpose of encouraging and supporting research and education on carcinoid and related neuroendocrine cancers.

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3. Carcinoid Cancer Awareness Network

The Carcinoid Cancer Awareness Network (CCAN) is a non-profit 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. Through the years CCAN has produced 17 conferences. Many are available to view on our website. DVD's & CD ROMS are also available. A toll free phone support line is answered by a patient and caregiver. They also provide funding for research into Carcinoid Cancer and other Neuroendocrine tumors.

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4. Caring for Carcinoid Foundation

The mission of the Caring for Carcinoid Foundation (CFCF) is to discover a cure for carcinoid cancer and related neuroendocrine tumors (NETs). Our vision is to eliminate the suffering of patients, families, and caregivers affected by carcinoid and related NETs. CFCF directs 100% of all individual donations to breakthrough scientific research. This is made possible by the generous support of CFCF's Board of Directors and corporate sponsors. Since its inception, CFCF has awarded over 4.5 million dollars in research grants to leading scientists at renowned institutions.

5. European Neuroendocrine Tumor Society

Society members, currently numbering nearly 600, bring a variety of expertise from such fields as oncology, pathology, radiology, nuclear medicine, endocrinology, surgery and gastroenterology, to ENETS. These founding members sought to unify neuroendocrine tumor disease research among European medical professionals. The primary aim was to integrate basic and clinical research with teaching and to establish guidelines for the diagnosis and therapy of gastroenteropancreatic neuroendocrine tumors (GEP NETs). In 2004 and 2005, the "Guidelines for the Diagnosis and Treatment of Neuroendocrine Gastrointestinal Tumours" were developed and, in April 2005, was published in the journal Neuroendocrinology. Revised Guidelines followed in 2006 and 2007, along with TNM classifications.

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