The following contact information is provided in order to foster open dialogue with your patients and fellow healthcare providers regarding neuroendocrine tumors. Visit these sites, and you will find a surprising number of people who deal with the challenges of NETs on a daily basis. The listings below are nationally based organizations. There are also a significant number of local/regional groups that focus on NETs.
The following Web sites are independently operated. Please note that this list may not be an exhaustive directory of all Web sites that provide information about neuroendocrine tumors. Novartis Pharmaceuticals Corporation assumes no responsibility for these sites, nor does it endorse or verify the accuracy of any of the information contained on third-party Web sites such as the ones listed here.
Government agencies and medical societies
National Cancer Institute (NCI)
www.cancer.gov 1-800-422-6237
The federal government's principal agency for cancer research and testing.
American Society of Clinical Oncology (ASCO)
www.cancer.net 1-888-651-3038
A wealth of oncologist-approved information about cancer.
North American NeuroEndocrine Tumor Society (NANETS)
www.nanets.net 1-360-314-4112
A nonprofit organization established by a group of physicians dedicated to improving NET management.
American Gastroenterological Association (AGA)
www.gastro.org 1-301-654-2055
Worldwide organization involved in all aspects of the science, practice, and advancement of gastroenterology.
National Institutes of Health Office of Rare Diseases Research (ORDR)
rarediseases.info.nih.gov 1-888-205-2311
The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases.
Patient advocacy groups
Carcinoid Cancer Awareness Network (CCAN)
www.carcinoidawareness.org 1-866-850-9555
CCAN is a nonprofit organization incorporated in 2004 to intensify awareness of carcinoid cancer and other NETs. CCAN assists support groups around the world in providing patients and caregivers access to important and updated information regarding the disease. Focused on awareness, education, and support, this New York-based group supports patients and groups across the United States and abroad. CCAN, which offers a toll-free support line that is answered by a patient and a caregiver at all times, has produced 17 conferences. Many of these conferences can be seen online, and some were recorded on CDs and DVDs. Call for a free information packet.
Carcinoid Cancer Foundation, Inc. (CCF)
www.carcinoid.org 888-722-3132
CCF is unique in that it has a dual mission: to educate healthcare professionals and the public about carcinoid cancer and related NETs and to encourage, conduct, and support research in these rare cancers. Founded in 1968, CCF has earned worldwide recognition as a resource for patients, medical professionals, and researchers. Nearly 1 million people from more than 100 countries worldwide have visited CCF's Web site, considered to be one of the most authoritative sources for NET information.
Caring for Carcinoid Foundation (CFCF)
www.caringforcarcinoid.org 1-617-848-3977
CFCF's mission is to discover a cure for carcinoid and related NETs. CFCF funds leading scientists, whose research will advance the understanding of NETs, with the goal of curing these diseases. Along with its focus on research, CFCF is committed to supporting patients, families, friends, and caregivers by providing them with up-to-date information.
Patient Advocate Foundation (PAF)
www.patientadvocate.org 1-800-532-5274
The PAF mission is to provide effective mediation and arbitration services to patients to remove obstacles to healthcare, including medical debt crisis, insurance access issues, and employment issues for patients with chronic, debilitating, and life-threatening illnesses. There is no cost for PAF services.
Pancreatic Cancer Action Network (PanCAN)
www.pancan.org 1-877-272-6226
PanCAN is a nationwide network of people dedicated to working together to advance research, support patients, and create hope for those affected by pancreatic cancer. The PanCAN Patient and Liaison Services (PALS) program is a comprehensive information service for pancreatic cancer patients, their families, and healthcare professionals. PALS provides quality, detailed information on topics including diagnosis, management options, clinical trials, diet and nutrition, specialists, and support resources. All materials and services are provided free of charge.
National laboratories offering CgA testinga
Adapted with permission from Ferolla P et al. J Endocrinol Invest. 2008;31(3):281.
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