CAUTION: Fortunately for us the medical treatments for NETs are being developed rapidly at this time. There may be out of date information. Especially in the videos which are 1 to 4 years old. They are still good starting points.
The Carcinoid Cancer Foundation (carcinoid.org) Highly Recommended. It has a NETs doctor database here: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
The Healing NET Foundation (thehealingnet.org) This has info for both Patients and Professionals. We encourage you to download or request a copy of and read their NET Primer, a great resource for patients and physicians. They also have a new guide to the PRRT treatment,
Neuroendocrine Tumor Research Foundation Good resources, including a doctor database here: https://netrf.org/patient-resources/doctor-database/ … Be sure to order and read their free guide: Neuroendocrine Cancer: A Guide for Patients and Families . You can also sign up for a monthly newsletter here
The NET Patient Foundation has good information.
Download this book (very technical, you may want to recommend to your physician): Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management
National Institute of Health has a good online book about NETs/Carcinoid Tumors
The North American Neuroendocrine Tumor Society Has treatment guidelines for doctors. Now a couple of years out of date.
By Pharmaceutical Companies
Ronny Allan – Living With Neuroendocrine Cancer – Very well researched, informative.
Support groups can offer emotional support as well as information. Be careful, although many groups are monitored by doctors, the information shared by patients may not be accurate.
The oldest group is probably an email listserv run by the Association of Cancer Online Resources. Join ACOR Carcinoid listserv here.
There are several Facebook groups:
Dr. Liu’s Zebras
Carcinoid Coffee Cafe
Neuroendocrine Cancer – Ronny Allan’s Group
Carcinoid Cancer Awareness Network
Goblet Helpthefight Carcinoid – this is about Goblet Cell, I do not know much about it.