FIND NEWS & INFORMATION

ORGANIZATIONS PROVIDING NET INFO

FIND CONNECTION & SUPPORT

Inspire manages secure and moderated online support communities for some 800,000 patients and caregivers.

FIND A LOCAL OR REGIONAL SUPPORT GROUP. *Support groups may be independently formed or part of other advocacy organizations such as the Neuroendocrine Cancer Awareness Network. Healing NET does not endorse any particular groups but provides these links as a helpful resource.

Carcinoid Cancer Foundation Support Group Directory

NorCal CarciNET Community (based in the Bay Area)

Los Angeles Carcinoid Neuroendocrine Tumors Society

Colorado NETS Support Group

The Philly NETs group

Wisconsin Neuroendocrine Cancer Connection

FIND OTHER RESOURCES

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.

Novartis offers basic information on NETS plus:

NEW Interactive experience "Galaxies of Hope". Click here to read the media release from Novartis

Click here for the free Apple download and Apple Featured Story

See materials from AAA (a Novartis company) on Lutathera, recently approved by the FDA: Lutathera Patient Brochure and PRRT Patient Stories, "A Journey of Hope"

Ipsen offers KnowYourNETS

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