Over the years, I have found invaluable information and support from all of the organizations and websites listed below. I invite you to visit these websites and reach out to these foundations and individuals for further support and information.
The Carcinoid Cancer Foundation was founded in 1968 and is a nonprofit organization that encourages and supports research and education on carcinoid and related neuroendocrine cancers. This contains comprehensive information about the disease, as well as a good listing of carcinoid specialists and doctors around the world.
The Caring For Carcinoid Foundation was founded in 2005 and has established itself as one of the most efficient not-for-profit funder of carcinoid and neuroendocrne tumor research. In addition to research, CFCF provides support to patients and their loved ones through it’s website, E-Updates, patient education materials, phone support and outreach programs.
The foundation has recently been updated and is called the NET Research Foundation. The link has been changed to reflect this.
The Carcinoid Cancer Awareness Network was founded in 2005 to provide information and support to NET patients and caregivers. They do this through email, their website, and phone support. CCAN organizes regional patient education conferences around the country each year, and produces education materials for patients and support groups.