FIND NEWS & INFORMATION

NET ORGANIZATIONS PROVIDING INFO

OTHER RESOURCES

To find clinical trials in neuroendocrine cancers, go to clinicaltrials.gov. Here's a clinical trial that is currently recruiting: Natural History of Familial Carcinoid Tumor

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

Ipsen offers KnowYourNETS

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"

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

Carcinoid Cancer Foundation Support Group Directory

NorCal CarciNET Community (based in the Bay Area)

Los Angeles Carcinoid Neuroendocrine Tumors Society

Colorado Carcinoid Cancer Support Group

The Philly NETs group