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On this page you will find various resources that provide useful information, support, and advocacy for neuroendocrine tumor patients.
Patient Organizations, Information, and Support
- American Cancer Society: A nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem. The ACS website provides many useful resources for cancer patients and supporters.
- Cancer.net: This website provides cancer information from the American Society of Clinical Oncology (ASCO), along with a guide of educational resources for more information on carcinoid and neuroendocrine tumors.
- Cancer Care: A national nonprofit organization that provides free, professional support services to anyone affected by cancer.
- Cancer Hope Network: A non-profit organization that provides free and confidential one-on-one support to cancer patients and their families.
- CancerProgress.Net: A project of the American Society of Clinical Oncology (ASCO) which shows the progression of cancer research over four decades.
- Comparing Health Care Quality: From the Robert Wood Johnson Foundation comes a tool that allows users to compare physicians and resources across various states in the US.
- Imerman Angels: An organization that provides personalized connections that enable 1-on-1 support among cancer fighters, survivors, and caregivers.
- Livestrong Foundation: The Livestrong Foundation provides support to guide people through the cancer experience.
- Living Well With Carcinoid: Nutrition recommendations for neuroendocrine tumor patients from Board Certified Specialist in Oncology Nutrition, Jodi Newson M.S., R.D., C.S.O.
- MedifocusHealth Guide on Carcinoid Tumor: This section provides a valuable directory of resources, organizations, and support groups for more information about carcinoid tumors.
- National Organization for Rare Disorders: A federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases.
- Neuroendocrine Tumors: A comprehensive guide to diagnosis and management of neuroendocrine tumors from the InterScience Institute.
- Pheo Para Troopers: A patient-run group whose goal is to empower and support patients living with pheochromocytoma and paraganglioma while contributing to finding a cure for these diseases
- Social Security Agency Benefits for People with Disabilities: The Social Security and Supplemental Security Income disability programs are Federal programs that provide assistance to people with disabilities. Only individuals who meet medical criteria may qualify for benefits under either program.
- Air Care Alliance: Connects patients in need of air transportation to members of a league of humanitarian flying organizations.
- Air Charity Network: Provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis.
- Chronic Disease Fund: A full service financial and medical assistance organization. Helps underinsured patients obtain the medications they need.
- Corporate Angel Network: This organization helps cancer patients access the best possible treatment for their specific type of cancer by arranging free travel to treatment across the country using empty seats on corporate jets.
- Hope Lodge: Free, temporary housing facilities for cancer patients at 22 locations sponsored by the American Cancer Society.
- Lois Merril Foundation: A non-profit organization that helps carcinoid cancer patients through funding research for new treatments, providing financial support for patients and their families, and promoting awareness and education for carcinoid and other rare cancers.
- National Association of Hospital Hospitality Houses: Connects patients to various facilities where patients and their families may stay when the patient is receiving treatment.
- National Patient Travel Center: Provides information about all forms of charitable, long distance medical air transportation and provides referrals.
- Needy Meds: Includes a database of Patient Assistance Programs, Disease Based Assistance Programs, a list of Free/Low Cost Clinics and other resources.
- Patient Access Network: Provides help to the underinsured access the health care they need.
- Patient Advocate Foundation: Assisting patients with medical debt crisis, insurance access issues, and job retention issues.
- Patient AirLife Services: Patient AirLift Services arranges free air transportation based on need to individuals requiring medical care.
- Prescription Assistance Program: Connects qualifying patients without prescription drug coverage to relevant patient assistance programs to get the medicines they need at a reduced cost.
- Rx Hope: Provides information on patient assistance programs for low-income patients on certain medications.
Pharmaceutical Company Sponsored Resources
Patient Education Resources
- Cancer: It's Personal (Pfizer): Informs patients about personalized medicine, clinical trials, and how to talk to your doctor about biomarker testing.
- CarcinoidLink (Novartis): A resource to learn more about carcinoid syndrome.
- NETipedia (Ipsen): Attempting to improve on PubMed, the NETipedia gathers, structures and shares information related to an understanding of neuroendocrine tumors. It enables anyone to add or comment on information in the database.
- The Net Community (Novartis): To help patients and caregivers better understand neuroendocrine tumors and connect with one another.
- Pancreatic NET Connections (Pfizer): Provides information and relevent resources for patients with pancreatic neuroendocrine tumors.
Patient Assistance Programs
- Amgen Assist (Amgen Inc.)
- First Resource (Pfizer)
- Genentech Access Solutions (Genentech Inc.)
- Patient Assistance Program (Novartis)
- Patient Access, Care & Education for Somatuline Depot (Ipsen)
- Reimbursement and Support Services for Sandostatin LAR Depot (Novartis)
- Reimbursement Support Services from First Resource for Sutent (Pfizer)
Prescription Drug Resources
- Afinitor (everolimus): www.afinitor.com
- Sandostatin Depot (octreotide): www.us.sandostatin.com
- Somutuline Depot (lanreotide): www.somatulinedepot.com
- Sutent (sunitinib malate): http://www.sutent.com