Resources for Patients With Neuroendocrine Tumors

North American Neuroendocrine Tumor Society

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

Carcinoid Cancer Foundation

The Carcinoid Cancer Foundation™ began as the Carcinoid Tumor and Serotonin Research Foundation in 1968 when the 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 tumors.

Neuroendocrine Cancer Awareness Network

Neuroendocrine Cancer Awareness Network NCAN is a non-profit organization incorporated in 2004.  It was formally known as the Carcinoid Cancer Awareness Network.  Their mission is to increase awareness of neuroendocrine cancer in both the medical community and the general public. NCAN assists patients and caregivers by providing access to important information about the disease through online platforms and a toll-free number.  They have provided funding for research into all types of neuroendocrine tumors. For the past 15 years, NCAN has provided information and support to neuroendocrine tumor patients and caregivers. NCAN has been honored with Great Nonprofits Top-Rated Award every year since 2009. NCAN was the co-founder of NET Cancer Day. NCAN has produced over 63 patient conferences since 2003.

Neuroendocrine Tumor Research Foundation

The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers.  It wqs formerly known as the Caring for Carcinoid Foundation.  To achieve rapid discovery of cures, the NET Research Foundation directs its donations to fund breakthrough scientific research of neuroendocrine cancers. Since its inception, the NET Research Foundation has awarded $20 million in large-scale, multi-year research grants to leading scientists at renowned research institutions around the world.

The NET Research Foundation is committed to improving the lives of patients, families, and caregivers affected by neuroendocrine cancer by providing information and educational resources.  They host four Neuroendocrine Tumor Patient & Caregiver Educational Conferences annually, which serve to provide the latest information on research and treatment options, while also connecting patients and caregivers with doctors, researchers, and peers.  Their website offers a searchable doctor database, listings of all relevant organizations and support groups, information on their latest research projects, and a number of resources to help those who are affected by neuroendocrine cancers.

European Neuroendocrine Tumor Society

The European Neuroendocrine Tumor Society was founded in 2004 and has a current membership of nearly 1200 individuals, bring a variety of expertise from such fields as oncology, pathology, radiology, nuclear medicine, endocrinology, surgery and gastroenterology. 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 neuroendocrine tumors.  Their most recent comprehensive guidelines were published in Neuroendocrinology in 2016. ENETS has also set up a European multinational registry for patients with neuroendocrine tumors to enhance and foster multicenter investigations, to collect and deliver information on the efficacy and safety of diagnostic and therapeutic strategies to care for or treat neuroendocrine tumors, and to scientifically investigate the epidemiology of neuroendocrine tumors.