Many people find it easier to watch video presentation than to read all of the technical things on the internet about neuroendocrine tumor and try to winnow out the fluff and nonsense.
We have added a video page always available from the main menu above, with youtube video playlists from a number of trusted sources. Our intent is to keep this up to date, so that the information is now and not stale.
We will certainly post the videos from the NETRF 2019 Patient and Caregiver Conference on August 10, 2019 as soon as they are available.
May we all have the best possible outcomes.
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…
An informational NET meeting will be held Saturday, February 23 2019. Time: 12:00 to 4:00
9755 E. Girard Ave. Denver, CO 80231
Hampden Branch/Denver Public Library.
Our guest speaker: Pamela Gaytan BSN RN, Clinical Nurse Manager Lexicon Pharmaceuticals. She was Dr. Eric Liu’s former nurse. She has worked with NET patients. NET doctors all over the country. Her knowledge, experience, empathy and compassion for the NET community will make this meeting invaluable to NET patients, caretakers, and anyone wanting to learn more about Neuroendocrine Cancer.
ALL ARE WELCOME…
For more information please contact: firstname.lastname@example.org
Thanks for joining us!
We are working toward supporting our neuroendocrine cancer (NETs) survivors and caretakers. We also are creating awareness, encouraging development of treatments and even cures!
Why the zebra stripes? In medical schools, students learning to diagnose are sometimes told “When you hear hoofbeats, think of horses, not zebras.” This encourages the new doctor to look for the obvious, common causes, not the exotic ones.
The problem is that neuroendocrine tumor (NETs) has been so unusual that the average time to diagnosis has been six years! Thus, we call ourselves zebras.
Let’s raise awareness! I’d rather not be a zebra anymore.