NET Groups & Organizations
PATIENT ADVOCACY ORGANIZATIONS
The Carcinoid Cancer Foundation is the oldest nonprofit carcinoid/and related neuroendocrine tumor organization in the United States, founded in 1968. The mission of this foundation is to increase awareness and educate the general public and healthcare professionals regarding carcinoid and related neuroendocrine tumors (NETs), to support NET cancer patients and their families, and to serve as patient advocates.
Visit www.carcinoid.org to learn more.
The Healing NET Foundation mission: To optimize the care of those with neuroendocrine cancer through the education of and collaboration among physicians, health care providers, patients, and caregivers. Healing NET offers free downloadable guides for patients, healthcare professionals and high grade neuroendocrine tumors:
Visit www.thehealingnet.org for more information.
The mission of the Neuroendocrine Tumor Research Foundation (NETRF) is to fund research to discover cures and more effective treatments for neuroendocrine cancers. To achieve rapid discovery of cures, the NET Research Foundation directs its donations to fund breakthrough scientific research of neuroendocrine cancers. Click here to complete the request form for the NETRF Guide for NET Patients & Families.
Learn more: www.NETRF.org
NorCal CarciNET is a patient support group in Northern California. Their 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.
For more information: www.norcalcarcinet.org
The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated to raising awareness of Neuroendocrine Cancer, providing support for caregivers and people with NETs, and funding for NET cancer research. Since 2003, it has been their mission, or as they like to say, their passion, to educate and support the NET community as a whole.
To learn more, visit www.netcancerawareness.org/patient-info.
The International Neuroendocrine Cancer Alliance’s mission is to be the global advocate for neuroendocrine cancer patients. INCA provides NET patient information packs in 10 languages for patients, health professionals, and anyone wanting to better understand NETs.
Go to incalliance.org to learn more.
The Carcinoid-NeuroEndocrine Tumour Society (CNETS) – Canada was formed in 2007 to assist the Canadian community, primarily patients, with this type of disease.
For more information, visit cnets.ca; check out the NET reference guide.
Association for Multiple Endocrine Neoplasia Disorders (AMEND) - A patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumors.
Click here to download the AMEND guide to starting a family.
The North American Neuroendocrine Tumor Society (NANETS) is dedicated to educating medical professionals on the diagnosis and treatment of NET disease and supporting research and innovation in the field.
While NANETS does not provide direct patient education, patients may help further NET education of medical professionals by sharing the organization's educational meetings and NET guidelines with their providers. NANETS provides the following educational programs and resources for medical providers:
For patient resources, visit NANETS Patient Resources.
Inspired by responses to the Carcinoid Impact Survey, The About Carcinoid Community was created to connect people who are living with Carcinoid Syndrome. Ask questions, receive answers, and access support tools all in one online community.
Learn more here: www.aboutcarcinoid.com
DRLC’s Cancer Legal Resource Center (CLRC) was founded in 1997 to address the legal issues faced by people with cancer, unique in the larger disability community, and is committed to providing information and resources about cancer-related legal issues to members of the cancer community across the nation. CLRC is the only national dedicated center for patients, survivors, caregivers, and health care professionals to access confidential cancer-related legal information and resources at no cost.
More info here: www.cancerlegalresources.org.
Triage Cancer provides education on legal and practical issues that may impact individuals diagnosed with cancer and their caregivers. Triage Cancer provides education on issues related to work, insurance, disability benefits, finances, estate planning, medical decision-making, and more. Offers free in-person and online educational events, materials, animated videos, and state-specific resources. Provides free one-on-one help to assist individuals understand their options and possible next steps, as well as CancerFinances.org, which helps people navigate finances after cancer.
For more information, visit TriageCancer.org.
American Cancer Society Personal Health Manager - This organizational portfolio for newly diagnosed patients – with information tailored to their type of cancer – can help patients and caregivers make educated health decisions and get connected to local resources and services.
bit.ly/ACS_Resource (Free Personal Health Manager kit for patients)