Resources
In this section you will find artilces and links that our support group finds useful. We also maintain a lisiting of Books of Interest.
Please remember, this website and our support group is run by patients and caregivers not medical professional and as such any information presented here or in our support group should be verified and discussed with your medical team.
In September 2012 the national neuroendocrine conference was held in New Orleans. We will post a link when the conference videos are available.
We were able to take some pictures of various slides as they were presented.
When you are diagnosed, it may seem that there are endless decisions to make and countless questions. A good place to start to better understand you or the person your are helping is by reading the guidelines for diagnosis and treatment for NETs and Carcinoids. These publications are written by NET specialist and cover the diagnostic and treatment approach for those with NETs in the country or region they are written for.
Please click the following country or region for the appropriate guideline.
North American NANETS
National Comprehensive Cancer Network Guideline (Free Registration Required)
Europe / ENETS
PRRNT Guidelines - Joint IAEA, EANM, and SNMMI practical guidance for PRRNT
Octreoscan Guidelines - SNMMI Guidelines
This article was provided by one of our founding board members Julie Portelli. To contact Julie This email address is being protected from spambots. You need JavaScript enabled to view it..
If you have health insurance, you have entered into a legal contract with your insurer. You make your payments and they should do everything written in the "contract". While it works well most of the time there are times you will receive a denial for a service or treatment. Don't give up – now you have to prove to your insurance company where in their contract it calls for the service or treatment you are requesting. First things first - you need your contract. Not everyone who has "XYZ" insurance has the same contract.
Interested in being able to search for clinical trials directly from your smartphone ? Novartis has worked with a smartphone developer to release Clinical Trial Seek so you can navigate and search for a clinical trial directly from you phone.
My NET Manger from Novartis will help you track your symptoms as well as manually input test results if your provider does not have electronic medical records.
Manage your NET with My NET Manager, the first mobile app for patients with neuroendocrine tumors (NETs). Patients now have the ability to organize their care with an all-inclusive mobile app.
Search for My Net Manger on your smartphones application store or use this link to find it on the Android Marketplace
Attending a local support group meeting is a great way to find out more information about treatement and resources available in your area. While we welcome you at our support group meetings, we realize that other support groups may be closer to you. In Northern California we are fortunate to have two additional support in addition to NorCal CarciNETs. Northern California Neuroendocrine Cancer Fighters (NCNCF) and Roseville Carcinoid Cancer/NETs Cancer Group.
For those with Multiple endocrine neoplasia (MEN) you may wish to visit AMEND. AMEND is an international patient group providing information and support to anyone affected by multiple endocrine neoplasia disorders and associated endocrine tumors and syndromes. AMEND is run by patients for patients, providing free worldwide email and telephone support for patients, together with patient information produced with the help of an expert medical advisory team. AMEND also runs a patient Research Registry and a Research Fund and Young Investigator Awards for medical professionals.
For a complete list of NET support group visit Caring for Carcinoid's website.
2012 US NETS Conference September 20-22, New Orleans
2009 National Carcinoid Conference - Video of the 2009 conference
The Carcinoid Cancer Foundation. Detailed description of the entire spectrum of carcinoid disease diagnosis and treatment.
The NET Alliance. Information on NETs and Carcinoid from Novartis
Caring for Carcinoid Foundation. A nonprofit that directs 100% of all individual donations to research into a cure for carcinoid cancer