NET SUPPORT AND RESOURCES
A WEALTH OF INFORMATION AT YOUR FINGERTIPS
Looking for more ways to stay informed or connected with others in the NET community? Here are some helpful sites that focus on NETs. Some of these informational sites are for nationally based organizations, while others are local and regional groups.
The following websites are independently operated and not managed by Novartis Pharmaceuticals Corporation. Novartis assumes no responsibility for these sites.
*These websites are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation does not guarantee the accuracy completeness, adequacy, or any other aspect of the information contained on the sites.
NET ADVOCACY GROUPS
Carcinoid Cancer Awareness Network (CCAN)*
1-866-850-9555
CCAN is a nonprofit organization dedicated to increasing awareness of carcinoid cancer and other NETs. Focused on education and support, the group helps patients and groups across the United States and abroad.
Carcinoid Cancer Foundation, Inc. (CCF)*
888-722-3132
CCF's dual mission is to bring about greater awareness and education of carcinoid and related neuroendocrine cancers in both the patient and medical communities, and to encourage and support research on these rare diseases. More than 1 million people have visited the Foundation's website, which is considered to be a premiere resource for up-to-date and comprehensive information on carcinoid/NETs.
Caring for Carcinoid Foundation (CFCF)*
1-617-848-3977
CFCF's signature is the aggressive pursuit of a cure through scientific funding. Its mission is to cure carcinoid and related neuroendocrine tumors. Its vision is to eliminate the suffering of patients and family members affected by these tumors.
Pancreatic Cancer Action Network (PanCAN)*
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, including pancreatic NETs. 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, treatment options, clinical trials, diet and nutrition, specialists, and support resources. All materials and services are provided free of charge. To connect with PALS, e-mail pals@pancan.org or visit the website.
GENERAL ADVOCACY GROUPS
Cancer Adventures*
Cancer Adventures is a nonprofit organization founded by a metastatic prostate cancer survivor. It is dedicated to educating people about cancer prevention and early detection, as well as quality of life and the importance of living life with purpose and giving back to the community.
CancerCare, Inc.*
1-800-813-HOPE
CancerCare is a national nonprofit organization that provides free professional support services to anyone affected by cancer.
Cancer Support Community (CSC)*
www.cancersupportcommunity.org
202-659-9709
CSC is an international nonprofit organization dedicated to providing support, education, and hope to people affected by cancer. The organization offers a network of personalized services and education for all people affected by cancer. Support services are available through a network of professionally led community-based centers, hospitals, community oncology practices, and other nonprofits, as well as online.
Carcinoid Cancer Info*
Carcinoid Cancer Info was founded by Susan L. Anderson in 1997, and was the first carcinoid support site created by a patient. Susan's mission is to encourage people to learn as much as possible about their cancer, while still leading a fulfilling life. It is her personal goal to respond to every e-mail received through the site.
National Organization for Rare Disorders*
1-800-999-6673
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.
Patient Advocate Foundation (PAF)*
1-800-532-5274
PAF's 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.
GOVERNMENT AGENCY
National Cancer Institute (NCI)*
1-800-422-6237
NCI is the federal government's principal agency for cancer research and training.
MEDICAL ORGANIZATIONS
American Society of Clinical Oncology (ASCO)*
1-888-651-3038
ASCO provides oncologist-approved information about cancer. The website can be viewed in English or Spanish.
North American Neuroendocrine Tumor Society (NANETS)*
NANETS is a nonprofit organization established by a group of doctors dedicated to improving the management of NETs. The group sponsors educational and research programs for doctors and researchers working with NETs.
NOVARTIS ONCOLOGY RESOURCES
The following websites are operated by Novartis Oncology.
CarcinoidLink
1-888-669-6682
CarcinoidLink is an informative site focused on carcinoid syndrome. It provides a medical explanation of the condition, management strategies, patient stories, and other resources.
The NET Community
The NET Community was created to help patients and caregivers better understand NETs and connect with one another. This website provides information about NETs, the opinions of NET experts, and includes inspirational stories from real individuals living with NETs.
The NET AllianceTM
The NET Alliance is helping to advance the knowledge and management of neuroendocrine tumors (NETs). Its website provides information for healthcare providers about NET facts, diagnosis, management, and much more.
(This website is written and prepared for healthcare providers only.)
EVENTS
Worldwide NET Cancer Awareness Day*
Take part in supporting the third annual Worldwide NET Cancer Awareness Day on November 10, 2012.
