NorCal CarciNET Community
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.
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NorCal CarciNET Community is now a 501(c)(3) (Tax-Id 45-2968919)
Contribution made to our group are now tax deductible.
COVID-19 and NETS
We are posting questions that are being collected at slido.com/NETCOVID
We are grateful to Dr. Pamela Kunz, MD (Oncology) and Dr. Janice (Wes) Brown, MD (Infectious Disease)
of Stanford University for their assistance in answering these questions.
As information is changing rapidly - Please consult with your medical team and the resources listed below for any updates or changes.
We welcome you to join our mailing list to be kept up to date.
If you experience symptoms of fever, cough or breathing problems please call your medical provider immediately to be evaluated for COVID-19.
Click here for COVID-19 and NETS Frequently Asked Question Page
Interview with Dr. Pamela Kunz on 2020 Bay Area Conference Cancellation and COVID-19
2019 Bay Area Neuroendocrine Patient Conference - Hosted by UCSF
2019 Neuroendocrine Tumor Patient Conference
Hosted by:UCSF Helen Diller Family Comprehensive Cancer Center
In cooperation with NorCal CarciNET Community, and Stanford University Medical Center
Sunday, February 10, 2019 - 8:30 am to 5:00 pm
Mission Bay Conference Center - 1675 Owens Street, San Francisco, CA
The day will feature nationally-renowned UCSF and Stanford NET experts, along with other internationally-known physician specialists who will offer sessions on a wide variety of topics pertaining to Neuroendocrine Tumors (NETS) including surgery, liver directed therapy, imaging, PRRT, current clinical trials and strategies for living well after diagnosis. A pre-conference “primer” is offered for those newly diagnosed or in need a refresher on the basics of NETs. We will also have breakout sessions by disease types and breakouts specifically for caregivers.
New in 2019 - Extend lunch time table talks. We are extending lunch networking time to 90 minutes and expanding the number of networking table topics.
Open to patients, caregivers and those interested in NETs.
Thanks to generous support from NorCal CarciNET Community, and our Industry Partners there is no registration fee. Conference registration includes lunch and parking.
Click on Read more info for speakers, agenda, and supporters.
MEDICARE / CMS and Reimbursement for Advanced Radiopharmaceuticals
On October 18, 2019, an opinion piece that NorCal CarciNET Community’s Josh Mailman opinion article (“CMS policy shouldn't penalize those with rare disease”) was published by The Hill, The opinion piece highlighted the challenges with the current method that Medicare/CMS use to pay for radiopharmaceuticals. This webpage provides more information on how this will impact NET patients and providers along with a tool for those that are interested in taking action.
The Medicare Diagnostic Radiopharmaceutical Payment Equity Act of 2019 (H.R. 3772), which many in the nuclear medicine community are working on to help improve, will impact Medicare payments for imaging only. This bill is not looking at broader medical payment, billing or cost issues.
In 2008, Medicare/CMS simplified how CMS paid for PET Imaging. The simplification reduced an infinite combination of supplies and tracers to a few PET bundles based on tracer cost. These bundles allowed a provider to bill for all PET imaging in a simplified manner. The most expensive bundle is ~ $1,400 (there are some regional adjustments).
Videos from the 2018 Bay Area NET Patient Conference
Videos from the 2018 Bay Area NET Patient Conference - View them all here.
Keynote: Dr. Steve Pantilat