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.
2014 Neuroendocrine Tumor Patient Conference
Hosted by: NorCal CarciNET Community & UCSF Helen Diller Family Comprehensive Cancer Center
Sunday, January 19, 2014 - 9:00 am to 4:00 pm
NEW Location Krutch Theater (Clark-Kerr) on the UC Berkeley Campus
Please join us for a day of discussion on the latest developments in neuroendocrine tumor (NET) research and treatment. Topics will range from discovery and diagnosis through treatment and living with cancer and feature experts from around the world. Open to both patients, caregivers and those interested in NETs.
Click here to download a flyer for your support group or doctor's office.
BREAKING NEWS – the radiopharmaceutical Gallium-68 (DOTA0-hel-Tyr3) octreotide (Ga-68 DOTATOC) has been designated as an orphan drug by the US Food and Drug Administration (FDA) for the management of neuroendocrine tumors. This designation is significant because it may lead to faster approval of the agent, which would greatly benefit carcinoid/NET patients in the United States. Click here to read the full release the Society of Nuclear Medicine and Molecular Imaging and from Josh Mailman, chairman of the Society’s Patient Advocacy Advisory Board and president of the NorCal CarciNET Community.
On Sunday June 9th, 2013 the Society of Nuclear Medicine and Molecular Imaging Patient Advocacy Advisory Board (PAAB) held a patient education day at their annual meeting. The patient program is designed for patient and those who support them as well as the general public to learn more about molecular imaging and treatments. The day included a special NETs breakout in the afternoon covering specific imaging and treatments available for those with NETS delivered by international experts. NorCal CarciNet's Josh Mailman is the current chair of the PAAB and gave a keynote address at the conference.
We have linked the Agenda below to the online presentation. We hope you find the information useful.
On Saturday, December 7th, 2013, NorCal CarciNet Community welcomed Stephanie A. Fajuri, Staff Attorney from the Cancer Legal Resource Center (CLRC) joining us to help us better understand our choice with the Affordable Care Act and Covered California. We have recorded the presentation and CLRC has made the presentation available to us. Click here to download the presentation. The handouts for the presentation are available by clicking here. Additional information / presentations from the CLRC are available by clicking here.
Please understand that the information was current as of December 7th, 2013 but that changes can and do happen so please make sure to confirm any information you hear here. If you have additional questions or issues please click here for CRLC intake form or call 866-843-2572
On August 3rd, 2013, Dr. Eugene Woltering spoke to us via skype video conference. His talk "What's new in gene regulation of growing tumors?", brought us up to date on some of the latest new advances and thinking at the Kenner Clinic.