Carcinoid Cancer Foundation

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The Carcinoid Cancer Foundation (CCF) is a leading US-based patient advocacy organization focused on neuroendocrine tumors (NETs) and carcinoid cancer. Founded in 1968 by Dr. Richard Warner, CCF provides education, support, advocacy, and resources to patients and caregivers worldwide. The foundation collaborates closely with the Neuroendocrine Cancer Foundation (NCF, formerly LACNETS) and other organizations to enhance patient support and awareness.

CCF offers a variety of patient programs including a Support Line in partnership with NCF, educational video series, patient support groups, and advocacy initiatives. The foundation maintains strong ties with medical experts and professional societies such as NANETS and SNMMI. CCF also hosts live expert sessions and provides multilingual educational materials through INCA.

CCF's website features extensive patient resources on diagnosis, treatment options, insurance appeals, nutrition, and clinical trials. The organization is active in raising awareness for rare diseases and NETs, including participation in Rare Disease Day campaigns.

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The Carcinoid Cancer Foundation (CCF) is a recognized organization dedicated to supporting patients and caregivers affected by neuroendocrine tumors (NETs) and carcinoid cancer. It provides educational resources, advocacy, support groups, and collaborates with other organizations such as the Neuroendocrine Cancer Foundation (NCF) and the North American Neuroendocrine Tumor Society (NANETS). CCF offers programs like the Support Line, Luncheon with the Experts (Facebook Live and YouTube events), and provides extensive patient information in multiple languages. The foundation also partners with pharmaceutical companies and research organizations to support NET patients.

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The Carcinoid Cancer Foundation (CCF) is a recognized organization dedicated to supporting patients and caregivers affected by neuroendocrine tumors (NETs) and carcinoid cancer. It provides educational resources, advocacy, support groups, and collaborates with other organizations such as the Neuroendocrine Cancer Foundation (NCF) and the North American Neuroendocrine Tumor Society (NANETS). CCF offers programs like the Support Line, Luncheon with the Experts (Facebook Live and YouTube events), and provides extensive patient information in multiple languages. The foundation also partners with pharmaceutical companies and research organizations to support NET patients.

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Carcinoid Cancer Foundation (CCF) is a nonprofit patient advocacy organization focused on neuroendocrine cancer, providing education, resources, and support for patients, caregivers, and clinicians. This page outlines general contact information and channels.

. Blog page for Carcinoid Cancer Foundation (CCF) featuring news, events, and resources related to neuroendocrine tumors. E-News Archives page listing past e-news items; includes a partnership announcement with Clarified Precision Medicine.

Events page for Carcinoid Cancer Foundation listing events related to neuroendocrine tumors and carcinoid research.

• NCAN National NET Patient Conference 2022 — 11/10/2022 to 11/12/2022
• NET Cancer Day 2022 — 11/10/2022
• Neuroendocrine Tumor Research Foundation Virtual Conference July 2022 — 07/24/2022
• Radionuclide Theranostics for the Management of Cancer — 07/17/2022 - 07/22/2022
• 6th Theranostics World Congress — 06/24/2022 - 06/26/2022
• LACNETS 2022 Neuroendocrine Tumor Patient Conference (Virtual Event) — 06/18/2022
• SNMMI Patient Education Day – Hybrid (In-Person and Virtual) — 06/12/2022
• National Cancer Survivors Day 2022 — 06/05/2022
• MENETS 2nd World Wide Neuroendocrine Virtual Congress — 04/12/2022 - 04/13/2022
• Penn Medicine’s 11th Annual Focus on Neuroendocrine Tumors (Virtual Conference) — 03/11/2022

. Support Groups page of the Carcinoid Cancer Foundation listing online support groups, directory access, and information on starting a support group.

Carcinoid Cancer Foundation (CCF) provides information and support for patients with carcinoid and neuroendocrine tumors (NETs). This page outlines the CCF Support Groups resources, including Online Support and Discussion Groups, Starting a Support Group, and a Support Groups Directory. The site also offers navigation to other patient resources and contact information for inquiries.

Key resources on this page include:

• Online Support and Discussion Groups
• Starting a Support Group
• Support Groups Directory

Contact: Carcinoid Cancer Foundation, 118 N. Bedford Road, Suite 100, Mt. Kisco, NY 10549-2555, USA. Phone: 914-683-1001. Website: https://www.carcinoid.org

. Guidance article on starting a carcinoid (neuroendocrine tumor) support group, including steps, structure, publicity, and best practices. Survival resources page featuring survivor stories and patient-oriented information from the Carcinoid Cancer Foundation. Survival resources and survivor stories page of the Carcinoid Cancer Foundation, including survivor testimonials and resources for patients.

The Carcinoid Cancer Foundation (CCF) is a patient advocacy organization focused on carcinoid and neuroendocrine tumors (NETs). It provides extensive patient resources including survivor stories, educational materials, support groups, and advocacy efforts. The Foundation also engages in policy and regulatory activities, including patient representation at the FDA.

. Support Groups page for Carcinoid Cancer Foundation. Provides links to Online Support and Discussion Groups, Starting a Support Group, and a Support Groups Directory.

Guidance for starting a carcinoid (neuroendocrine tumor) support group, including recommended steps, structure, publicity strategies, and resources. The page provides tips on forming groups, selecting meeting locations, confidentiality, leadership, and engaging healthcare professionals.

. Survival resources page on the Carcinoid Cancer Foundation website, featuring survivor stories, support groups, patient resources, and information on insurance appeals and financial assistance. Diagnosis page on Carcinoid Cancer Foundation site with navigation to newly diagnosed basics, tests, and related resources. Newly Diagnosed #2 page provides information for patients newly diagnosed with carcinoid cancer or related neuroendocrine tumors. Contains medical opinions on diagnosis and treatment, links to PubMed searches, and general patient resources (American Cancer Society, NIH MEN1, HIPAA guidance). Includes a patient-focused contact center and references to professional groups such as Carcinoid-Dr Listserv. Find A Doctor directory for Carcinoid Cancer Foundation listing nationally and internationally recognized carcinoid/neuroendocrine tumor (NET) specialists with physician listings and specialties. General Information page for patients with links to diagnosis, treatment, nutrition, resources; includes contact info and social media links.

The Carcinoid Cancer Foundation provides nutrition-related information and patient education resources for neuroendocrine tumor (NET) patients, including videos, interviews, and downloadable guidelines referenced on their Nutrition page. Notable items include the Nutrition and Neuroendocrine Tumors video featuring Jeffrey I. Mechanick, MD, and Leigh Anne Kamerman Burns, RD, CDN, as well as links to nutritional concerns for carcinoid patients, nutrition and diet interviews, and downloadable nutrition guidelines.

. Nutrition and dietary guidelines for carcinoid disease compiled by the Carcinoid Cancer Foundation. Topics include general dietary guidelines (protein, carbohydrates, fats), niacin supplementation, management of amines and serotonin-containing foods, fluid intake, supplements, and case studies illustrating nutritional strategies for carcinoid syndrome and post-surgical nutrition considerations.

The Carcinoid Cancer Foundation provides information and resources on insurance coverage for treatments and prescriptions, including guidance on appealing denied claims. The page highlights a partnership with Laurie Todd, known as “The Insurance Warrior,” and describes how she helped patients overturn insurer denials and obtain coverage for lifesaving treatment. It also references related resources, including excerpts and a PDF version of The Carcinoid Cancer Foundation's What If Insurance Won’t Pay? guide.