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 Cares
Carcinoid Cancer Awareness Network
Lovable Lungoids
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.
There is a Carcinoid-Y group, a Yahoo Islet Cell group and a yahoo Caregivers 4 Carcinoid group. As of this entry on 8-12-15, the carcinoid group site has few participants.
The Mayo Clinic in Minnesota has maybe one or two knowledgeable doctors about NETS. The best known doctor is Dr. Heidi Connolly who is a cardiologist known for her treatment of Carcinoid Heart disease. While Mayo is a well-known medical institution it is not known as a place for NETS expertise.
This center is a well-known, but not so much for its expertise in NETS. One doctor in particular is known for treatment of NETS and this is Dr. Yao. His focus has always been on Chemo and Drug treatment. HIs patients are often entered into various treatment trials.
This is another famous medical center that is just starting to come into it own in the world of NETS. One of the doctors most involved with NETS has been Dr. Diane Reidy Lagunes
Started by the same people who developed the ACOR site for listservs. Focus is more on kidney cancer in its various forms than on NETS, but there are people who post about NETS. Worth looking into
As of July of 2015, this is the new "home" for Dr. Eric Liu. Also at this location is Dr. Nutting who is an Interventional Radiologist and specializes in the Y-90 spheres treatment of the liver.
This is the home of Dr. Eugene Woltering, Dr. Boudreaux and Dr. Wang. The specialty of the center is surgical treatment of NETS.
There is a forum for PNETS that is pretty interesting. When you sign up to be on the site, then you choose what group to join.
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