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What topics do you want for the Neuroendocrine Support Group?

Neuroendocrine Tumors (NETs) | Last Active: Feb 8, 2023 | Replies (45)
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@hopeful33250

Hello @collielady

I would encourage you to check with the NIH in Bethesda, Maryland. They have been doing research studies on families with NETs. Here is their website for clinical trials,
https://www.nih.gov/health-information/nih-clinical-research-trials-you
Also, have you had any genetic testing for yourself? If not, you may want to discuss this with your endocrinologist. I personally believe that all of us with NETs need to have an endocrinologist on our medical team. They have invaluable insight and knowledge into the workings of the body. I think of them as the IT professionals of the body system.

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Replies to "Hello @collielady I would encourage you to check with the NIH in Bethesda, Maryland. They have..."
Faith M | @collielady | Oct 8, 2019

Thanks for your reply, Teresa @hopeful33250. I contacted NIH a couple years ago about their research in familial carcinoid cancer. They were very interested in having my family join the research. But they needed proof of two relatives with NETs. And my half-sister refused to sign the release of information so her biopsy reports could go to NIH. And at that time they were not including Merkel Cell Carcinoma in their criteria. Needless to say sister and I were very disappointed. So now my focus is in finding out how family members could be checked for NETs so a diagnosis could be made early.
BTW - do you live in Jacksonville Beach?

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