This site was created in the spring of 2011 by Josh Mailman and Gary Murfin. The focus of the site is the treatment of Peptide Receptor Radionuclide Therapy (PRRT) and the use of the Gallium-68 PET/CT scan as a diagnostic and montoring tool for NETS.The site also provides information about getting this treatment at the Zentralklinik in Bad Berka, Germany where Josh and I have been treated with PRRT.
Professional medical society - Treatment guidelines are here.
Private Laboratory located in California. Comprehensive guide to NETS testing. Download or request the publication -- Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management.
Site operated by Novartis maker of Octreotide Acetate (sub-Q) and Sandostatin LAR (long acting)
Site by Ipsen, maker of Somatuline Depot, the long acting Lanreotide shot
This is a new site originating in August 2015. Basic info on NETS created by Ipsen Pharma
A US National Institutes of Health site that identifies all clinical trials and related information
Online list service using email to connect patients and caregivers. Go to site and look for Carcinoid Group and then sign up to receive posts to the listserve or get posts in a digest format.
Carcinoid Cancer Foundation
Carcinoid Neuroendocrine Cancer Awareness
Carcinoid Coffee Cafe
Carcinoid Cancer Awareness Network
Healing Net Foundation
NET Patients Sharing Knowledge and Experience
Dr. Liu’s Zebras
SCCA is an alliance between the University of Washington School of Medicine, The Fred Hutchinson Cancer Research Center and Children's Hospital. Several doctors knowledeable about NETS are located there.
Excel is located near Houston TX. It is a private clinic that has been in the forefront of NETS treatment using PRRT. They participate in several clinical trials on PRRT.
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