NET Patients: Are you Scheduled for Surgery?

If you are having surgery for a NET tumor, consider donating some of your tumor tissue to help research.

The Neuroendocrine Tumor Research Foundation is excited to be working with to empower patients to direct their excess cancer tissue samples to research projects. Samples donated via will be sent to the Broad Institute of MIT and Harvard, where they will be used to attempt to develop cell lines that can be used in research. This project has just been expanded to include samples from lung neuroendocrine tumors, in addition to pancreatic and intestinal NETs.

The Neuroendocrine Tumor Research Foundation’s partnership with and the Broad Institute is part of a larger effort to establish and genetically characterize cancer cell lines, which are cancer cells that keep dividing and growing over time in a laboratory. In developing these cancer cell lines, the Broad Institute is trying to enable the scientific community to improve our understanding of cancer, including neuroendocrine tumors.

If you or a NET patient you know has an upcoming surgery, you can visit to learn more about the project. links to an electronic consent form where patients can learn more about the project, find contact information for the protocol team at the Broad Institute so they can reach out should they have questions, and provide consent if they wish to contribute. Should a patient decide to provide consent, arranges for excess tissue to be collected at the hospital and shipped to Broad’s Cancer Cell Line  Research Lab. There is no cost to the patient.

If you wish to learn more, contact Barbara Van Hare, Rare Cancer Research Foundation, at 

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carolina cornelia sisselaar
1 year ago

my 55 year old identical twin sister is diagnosed with an NET tumor in her lung. It has also spread to her hip, leg back and lymphnodes. We live in the Netherlands. I am told that they can not give her immunotherapy because she does not have a certain gene.
Is this something that anybody is familiar with?

beth budreau
2 months ago

I was recently diagnosed with neuroendocrine carcinoid tumor, Im looking for a top expert Dr that specializes in this field, preferably in Fl but will travel

2 months ago
Reply to  beth budreau

Check out our “Find a NET Specialist” database. You can search by specialty and location.