FIND NEWS & INFORMATION
ORGANIZATIONS PROVIDING NET INFO
- National Comprehensive Cancer Network
NCCN Guidelines for Patients: Neuroendocrine Tumors
- Los Angeles Carcinoid Neuroendocrine Tumor Society
NET VITALS Tool for Patients
- North American Neuroendocrine Tumor Society Patient Resources
- Neuroendocrine Tumor Research Foundation Patient Resources
- The Carcinoid Cancer Foundation For Patients
- NET Patient Foundation (United Kingdom)
- Northern California CarciNET Community's Resource for Locating Ga68 Scans/PRRT
ResearchMatch is the place to volunteer for clinical trials. Researchers use the volunteer database to find candidates for their trials. If you want to search for a trial yourself, visit Trials Today at researchmatch.org, a quick way to search the thousands of studies available on ClinicalTrials.gov.
NEW Interactive experience "Galaxies of Hope". Click here to read the media release from Novartis
- NET Experience with "news, stories and numbers"
- NET Fusion with nutrition advice for patients with Carcinoid Syndrome
Lexicon provides information on Xermelo (telotristat ethyl), recently approved by the FDA for controlling diarrhea associated with Carcinoid Syndrome. Financial assistance is available through LexCares.
Recent retrospective study (1973 to 2012) of Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States
FIND CONNECTION & SUPPORT
ONLINE GROUPS--ACCESS FROM ANYWHERE
Inspire manages secure and moderated online support communities for some 800,000 patients and caregivers.
Loveable Lungnoids (Lung NET FB support group)
NET Patients Sharing Knowledge & Experience - This group focuses on providing NET information rather than emotional or spiritual support. (You must have a FB account to access this information).
Dr. Liu's Zebras - Dr. Liu holds an informative question and answer session in this group on the first Tuesday of the month. The files sections holds documents with the previous questions and answers (You must have a FB account to access this information).
Carcinoid Coffee Cafe - Both Dr. Woltering and Dr. Liu (two well-known specialists) are in this group and occasionally will answer a question (You must have a FB account to access this information).
Carcinoid Connection - FB page - is an online group to help patients impacted by carcinoid cancer learn to cope and to connect with others also affected by it.
Neuroendocrine Cancer Awareness Network provides support for patients via a hotline and provides information and support for support groups.
FIND A LOCAL OR REGIONAL SUPPORT GROUP