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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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@collielady

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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Replies to "Thanks for your reply, Teresa @hopeful33250. I contacted NIH a couple years ago about their research..."
Teresa, Volunteer Mentor | @hopeful33250 | Oct 9, 2019

@collielady Hello Faith,

I'm sorry to hear that your family could not take advantage of the NIH study. That really is too bad. I live in SE Michigan so I'm not at all close to Jacksonville. I envy those of you who are close to the Mayo Clinic in Florida!

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