We have added a new page to this blog which lists a large number of information sources for NETs! See the menu above. It now has NETs Information Sources as a link.
One of the worst problems with our disease is the difficulty of finding accurate, appropriate, reliable information about the disease and our own manifestations of the disease. Dr. Google can be very misleading sometimes. Our specialists want to help but usually can only answer the questions we ask and we don’t know what questions to ask.
The best approach we have found is that each patient must be their own best advocate (or have a loved one who can do it.) To be a good advocate one must be as well informed as possible.
Please help us. If you find inaccurate information, let us know. If you find a new trusted source, let us know.
May we all have the best possible outcomes…