NET SUPPORT AND RESOURCES

A WEALTH OF INFORMATION AT YOUR FINGERTIPS

Looking for more ways to stay informed or connected with others in the neuroendocrine tumor (NET) community? Here are some helpful sites that focus on NET. Some of these informational sites are for nationally based organizations, while others are local and regional groups.

NET ADVOCACY GROUPS

Carcinoid Cancer Foundation, Inc. (CCF)*

www.carcinoid.org

1-888-722-3132

CCF's dual mission is to bring about greater awareness and education about 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/NET.

NET Research Foundation (NETRF)*

www.netrf.org.

1-617-948-2514

NETRF 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.

Neuroendocrine Cancer Awareness Network (NCAN)*

www.netcancerawareness.org

1-866-850-9555

NCAN is a nonprofit organization dedicated to increasing awareness of carcinoid cancer and other NET. Focused on education and support, the group helps patients and groups across the United States and abroad.

New Jersey Carcinoid Cancer NETwork*

www.njcarcinoidnetwork.org

1-609-812-9294

The New Jersey Carcinoid Cancer NETwork is a 501(c)(3) organization. Its mission is to promote awareness of carcinoid and other NET, and to provide shared information to patients, caregivers, and medical professionals to assist them in managing their disease.

Pancreatic Cancer Action Network*

www.pancan.org

1-877-272-6226

The Pancreatic Cancer Action Network 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 NET. The Pancreatic Cancer Action Network Patient and Liaison Services (PALS) program is a comprehensive information service for pancreatic cancer patients, their families, and health care 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*

www.canceradventures.org

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 issues and the importance of living life with purpose and giving back to the community.

CancerCare*

www.cancercare.org

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

1-202-659-9709

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*

www.carcinoidinfo.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*

www.rarediseases.org

1-203-744-0100

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)*

www.patientadvocate.org

1-800-532-5274

PAF's mission is to provide effective mediation and arbitration services to patients to remove obstacles to health care, 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)*

www.cancer.gov

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)*

www.cancer.net

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)*

www.nanets.net

1-360-314-4112

NANETS is a nonprofit organization established by a group of doctors dedicated to improving the management of NET. The group sponsors educational and research programs for doctors and researchers working with NET.

NOVARTIS ONCOLOGY RESOURCES

The following websites are operated by Novartis Oncology.

CarcinoidLink

www.carcinoid.com

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 AllianceTM (Patients)

www.thenetalliance.com

The NET Community was created to help patients and caregivers better understand NET and connect with one another. This website provides information about NET and the opinions of NET experts, and includes inspirational stories from real individuals living with NET.

The NET AllianceTM (Professionals)

www.neuroendocrinetumor.com

The NET Alliance is helping to advance the knowledge and management of neuroendocrine tumors (NET). Its website provides information for health care providers about NET facts, diagnosis, management, and much more.

(This website is written and prepared for health care providers only.)

EVENTS

Worldwide NET Cancer Awareness Day*

www.netcancerday.org



*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.

 

Novartis Patient Advocacy

Novartis Oncology and Patient Advocacy provide support to patients through an array of programs and services.

The NET Alliance

The NET Alliance is a Novartis Oncology initiative working to help improve outcomes for patients with NET.