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Links and Resources

a place to find links to everything I mention and places that can help

NET Orgs

  • LACNETs - Great org that connects patients, caregivers, practitioners and offers support groups, coaching, mentoring and education. Also has a great podcast and resources for newly diagnosed

  • NorCalCarciNet - Northern California group with support groups and a ton of knowledge and NETs experience

  • NJ-CCN - New Jersey based group helping drive awareness of NETs and connecting patients

  • NETRF - NET Research Foundation. Great podcast called NetWise and the org is very focused on research for NETs with great resources

  • Healing Net - Great org founded by Dr Eric Liu (NET Specialist Surgeon) and Cindy Lovelace (Patient). Great resources to help you understand NETs 

  • NCAN - NetCancerAwareness.org - a Family run org filled with personality and caring! They have a great phone line for support, groups around the country, and put on many events for patients.

  • PanCan - Pancreatic Cancer org that also offers help with PNETs. They have a great patient hotline, do free genomic testing of tumors (with Tempus) and are very helpful.

  • Let’s Win - Connects patients, caregivers, practitioners and researchers. They collect patient stories to help drive change. Primarily Pancreatic Cancer but some PNET content as well

  • NCCN - The place that Doctors go to understand treatment protocols. The link goes to the NET page. A huge resource in the medical community

  • Carcinoid Cancer Foundation - Supports education and research for NETs. Also great patient stories, videos and resources

  • NANETS - Primarily for practitioners they put on events (no rates for patients) and offer a lot of educational resources including podcasts

 

Cancer for Newbies

 

Kidney Cancer Orgs

  • KidneyCancer.org - Obviously an org focused on, you guessed it, Kidney Cancer! Helpful for Patients, Caregivers and Practitioners

 

Integrative and Natural Treatment Orgs

  • SIO - FYI, I am very involved with them. The Society for Integrative Oncology. Their mission is to advance evidence-based, comprehensive, integrative healthcare to improve the lives of people affected by cancer.

  • ONCANP - Focuses on the integration of Naturopathic care into Oncology and helping people with cancer.

  • CancerChoices.org - Helps you connect with integrative cancer care information and options that align with your journey and what matters most to you.

  • Great video of Dr. Donald Abrams from the Osher Center of Integrative Oncology at UCSF. "cancer is a weed, we need to tend to the garden". One of my new fave quotes

 

Facebook Groups

  • Ronny Allan - Great and very active group about NETs. A  lot of rules to join and you have to “apply” but full of great information and interactions

  • Dr Liu’s Zebras - Dr Liu is a leading NET specialist and this is a patients group filled with info and people to answer questions

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Great videos

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Stuff About Me

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Organizations Where I am Involved

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