Our mission is to help those with neuroendocrine tumors and carcinoid to share challenges and experiences, learn about prognosis and treatments, find information, and improve communications between the medical community, patients and caregivers. By providing opportunities for our members to connect with others who have these rare illnesses we will enable them not only to get their questions answered but also to give and receive emotional support. In addition, we aspire to bring greater awareness to the medical community and the public so as to promote earlier detection and treatment of these often unrecognized illnesses.
NorCal CarciNET Community is now a 501(c)(3) (Tax-Id 45-2968919)
Contribution made to our group are now tax deductible.
On June 1, 2016, the U.S. Food and Drug Administration (FDA) granted approval to NETSPOT form Advanced Accelerator Applications (AAA), the first kit for the preparation of Gallium-68 dotatate positron emission tomography (68Ga-dotatate PET) imaging. Gallium-68 dotatate is a positron-emitting analogue of somatostatin, and the radioactive probe helps locate tumors in patients with somatostatin receptor-positive neuroendocrine tumors.
“Use of advanced imaging techniques to detect rare neuroendocrine tumors at an early stage in patients is critical,” said Libero Marzella, director of the FDA Division of Medical Imaging Products.
Three studies have established the safety and efficacy of Netspot by comparing 68GA-dotatate PET imaging to standard imaging options as well as clinical and histopathological data in patients with neuroendocrine tumors.
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AAA Press Release
AAA Opens Lutathera Expanded Access Program In U.S. to Eligible Patients And Announces Forthcoming NDA Filing to FDA and EMA.
AAA today announced that the company has initiated an expanded access program (EAP) in the United States for the investigational product, Lutathera. Through the program, Lutathera is being made available for patients suffering from inoperable, somatostatin receptor positive, midgut carcinoid tumors, progressive under somatostatin analogue therapy. Healthcare professionals and patients can learn more about the Lutathera EAP by visiting www.clinicaltrials.gov (trial number: NCT02705313). To read more visit AAA's website.
2016 Neuroendocrine Tumor Patient Conference
Hosted by:UCSF Helen Diller Family Comprehensive Cancer Center
In cooperation with NorCal CarciNET Community, NET Research Foundation, Stanford University Medical Center
Sunday, January 24, 2016 - 9:00 am to 4:30 pm
View the recording of the LiveStream
On October 20, 2015 the Society for Nuclear Medicine and Molecular Imaging and the NorCal CarciNET Community hosted a webinar on PRRT featuring Dr. Ed Wolin and Dr. Eric Mittra. NorCal CarciNET's Josh Mailman facilitated the ensuing question and answer session. Over 95 participated in the webinar which can be viewed below. In addition the slides that were used are available by clicking here. Guidelines for the use of PRRT are avialble from the PRRTInfo.org website.
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On June 8, 2015, Josh Mailman, patient advocate, and president of the NorCal CarciNET Community, was honored with the 2015 Society of Nuclear Medicine and Molecular Imaging (SNMMI) Presidential Distinguished Service Award. The award reads, "For substantial contributions to the SNMMI patient outreach program and leadership of the Patient Advocacy Advisory Board (PAAB)."
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.
Many members of the NorCal CarciNET Support Group donate their time and energy to produce informational material for patient and caregivers living with Neuroendocrine Tumors.