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Links and Resources

A page of, you guessed it, Links and Resources to everything!

Ronny Allan is a well known patient advocate in the NETs space. I find his Facebook group extremely informative and the community is very warm and welcoming, if you agree to post according to the rules. I definitely recommend checking it out. 

The Learn Advocate Connect Neuroendocrine Tumor Society offers a lot of resources and information on NETs. One of the things I found most valuable was there Newly Diagnosed section, which is kind of like a NETs 101 course with great videos and resources

A family run and amazing resource for people with NETs. They also have a phone number that gets answered by a real person who has been diagnosed with NETs. Their resources are great and the org is extremely warm, friendly, caring and welcoming.

The Neuroendocrine Tumor Research Foundation exists to fund research and develop better treatments for people with NETs. After you've visited some of the newly diagnosed resources listed above, this is worth checking out. It might be a 201 NETs course, not really for beginners.

Another California group but a great one with a ton of resources including a newly diagnosed section. They also have a support group twice a week and work a lot with UCSF. They also offer yoga classes for NETs patients (I love that!)

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