There are many FaceBook groups, blogs, and online groups that provide information. Be aware of their status as public, closed, and private groups. Remember these groups are for support, not to provide you with medical advice or to replace your team of doctors.
Organizations and Websites
- CCF Carcinoid Cancer Foundation
- NCAN Neuroendocrine Cancer Awareness Network
- NETRF Neuroendocrine Tumor Research Foundation
- The Healing NET Foundation
- ACOR The Association of Cancer Online Resources (listserv)
- Ronny Allen A NET Cancer Blog
- Smart Patients
Facebook Groups
- Carcinoid Coffee Café
- Lovable Lungnoids
- Dr. Liu’s Zebras: A Neuroendocrine Cancer Community
- Living with Neuroendocrine Cancer – Ronny Allan’s Group
- Carcinoid Neuroendocrine Cancer Awareness
- Carcinoid Connection (also: carcinoid.com)
- Carcinoid Awareness (also: aboutcarcinoid.com)
- Zebra Caregivers Talk NETS (no patients)
- My Dazzle (sponsored by Lexicon) (“Dazzle” is the term for a group of zebras)
- NETs get COOKING
- Green Zebras (cannabis for NET cancer)
- Young Zebras: A Support Group for Young NET
- Cancer patients and their caregivers (or who were young when diagnosed)
- ZEBRA awareness Global NETS
- Zebra Zone: NET cancer Support Group (linked to Neuroendocrine Cancer Connection)
Additional resources can be found on our News and Notes.