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for Carcinoid
NET CELL LINE PROJECT The NETRF/Broad Institute NET Cell Line Project aims to create publicly available neuroendocrine tumor cell lines to be shared with any researcher, in any laboratory, anywhere in the world. Having a reliable NET cell line could expedite our molecular understanding of NETs and accelerate drug testing. NEUROENDOCRINE TUMOR PATIENT SUPPORT & ASSISTANCE NETRF does not provide patient financial assistance, but a few other nonprofit organizations do. National Organization for Rare Disorders (NORD) has a Patient Assistance Program for medication-specific assistance, disease-specific assistance, and clinical trial programs. Cancer Care is a national nonprofit organization that provides free, professional support services to anyone affected by cancer. MODELING NETS USING ADULT STEM CELL-DERIVED ORGANOIDS A study to engineer a “living biobank” of intestinal carcinoid and pancreatic NET tissue. Stem cells from healthyand tumor tissue specimens will be grown into organoids or “mini-organs” in a dish. The team will test whether certaingenomic changes lead to the development of tumors, in healthy organoids. They will use the NET organoids to testsensitivity to various drug treatments SHE DOESN'T LOOK LIKE SHE HAS CANCER Dr. Elizabeth Zide vs. Neuroendocrine Cancer Members “Nothing But NET” marathon relay team. (left to right) Elizabeth Zide, Alaina Kronenberg, and Cassi Cohen. Her lifestyle is the model of health and wellness. Elizabeth R. Zide, MD, eats an organic farm-to-table diet, swings kettlebells, and practices nutrition-based holistic medicine. Even still, she is among the thousands BETTER TREATMENTS FOR NEUROENDOCRINE TUMORS NETRFNEWSCONTACT USDONATEABOUT NETRFFOR PATIENTSFOR RESEARCHERS The Neuroendocrine Tumor Research Foundation (NETRF) offers information and education to those with neuroendocrine tumors.NETRF is the leading private funder of research into causes and treatments of neuroendocrine tumors (NETs) in the search for a cure. NEUROENDOCRINE TUMOR PATIENT STORIES Neuroendocrine Tumor Personal Stories. Sometimes it helps to hear how others are coping with neuroendocrine tumors. When possible, the Neuroendocrine Tumor Research Foundation (NETRF) shares NET patient stories. Find hope and inspiration in these individual personal journeys of survivorship. ORDER YOUR FREE NEUROENDOCRINE CANCER GUIDE An easy-to-understand neuroendocrine cancer guide for patients, family members, and caregivers from the leading funder of neuroendocrine cancer research. This helpful 64-page guide is essential for those newly diagnosed with neuroendocrine tumors and a handy reference for neuroendocrine tumor survivors. Packed with illustrations, definitions EATING RIGHT WITH A NEUROENDOCRINE TUMOR (NET) Minor adjustments in when and how you eat can also help alleviate diarrhea for those with neuroendocrine tumors. Eat small, frequent meals. Don’t drink while you are eating. Drink 30-45 minutes before a meal. Consume six to eight 8-ounce glasses of fluid a day. Spread fluid out during the day, taking regular sips of water. LEARN ABOUT GASTROINTESTINAL NEUROENDCRINE TUMORS What is the gastrointestinal tract? The gastrointestinal (GI) tract is made up of organs that help digest food. 4. Stomach: The stomach stores swallowed food and liquid, mixes the food and liquid with digestive juice, and slowly empties into the small intestine. Small intestine: The muscles of the small intestine mix food with digestive juices from the pancreas, liver, and intestine, while NEUROENDOCRINE CANCER VS. CARCINOID CANCER In most cases, the terms “carcinoid tumor” or “carcinoid cancer” are outdated ways to describe a slow-growing neuroendocrine tumor (NET). Generally speaking, the term “carcinoid” has fallen out of favor. For the first ten years in its history, the Neuroendocrine Tumor Research Foundation (NETRF) was called the Caringfor Carcinoid
NET CELL LINE PROJECT The NETRF/Broad Institute NET Cell Line Project aims to create publicly available neuroendocrine tumor cell lines to be shared with any researcher, in any laboratory, anywhere in the world. Having a reliable NET cell line could expedite our molecular understanding of NETs and accelerate drug testing. NEUROENDOCRINE TUMOR PATIENT SUPPORT & ASSISTANCE NETRF does not provide patient financial assistance, but a few other nonprofit organizations do. National Organization for Rare Disorders (NORD) has a Patient Assistance Program for medication-specific assistance, disease-specific assistance, and clinical trial programs. Cancer Care is a national nonprofit organization that provides free, professional support services to anyone affected by cancer. MODELING NETS USING ADULT STEM CELL-DERIVED ORGANOIDS A study to engineer a “living biobank” of intestinal carcinoid and pancreatic NET tissue. Stem cells from healthyand tumor tissue specimens will be grown into organoids or “mini-organs” in a dish. The team will test whether certaingenomic changes lead to the development of tumors, in healthy organoids. They will use the NET organoids to testsensitivity to various drug treatments SHE DOESN'T LOOK LIKE SHE HAS CANCER Dr. Elizabeth Zide vs. Neuroendocrine Cancer Members “Nothing But NET” marathon relay team. (left to right) Elizabeth Zide, Alaina Kronenberg, and Cassi Cohen. Her lifestyle is the model of health and wellness. Elizabeth R. Zide, MD, eats an organic farm-to-table diet, swings kettlebells, and practices nutrition-based holistic medicine. Even still, she is among the thousands LEADING FUNDER NEUROENDOCRINE TUMOR RESEARCH The Neuroendocrine Tumor Research Foundation is committed to improving, extending, and saving the lives of those affected by neuroendocrine cancer by providing information and educational resources. Online resources to help newly diagnosed patients chart their course and practical information to help NET survivors live their best life. Regional ABOUT NEUROENDOCRINE TUMORS A neuroendocrine tumor (NET) is an uncommon cancer type that forms in neuroendocrine cells (Neuroendocrine tumors may also be called islet cell tumors, carcinoid cancer, or carcinoid tumors). NETs can occur almost anywhere in the body, but neuroendocrine tumors most commonly form in the gastrointestinal tract, lung, and pancreas. ORDER YOUR FREE NEUROENDOCRINE CANCER GUIDE An easy-to-understand neuroendocrine cancer guide for patients, family members, and caregivers from the leading funder of neuroendocrine cancer research. This helpful 64-page guide is essential for those newly diagnosed with neuroendocrine tumors and a handy reference for neuroendocrine tumor survivors. Packed with illustrations, definitions LEARN ABOUT LUNG NEUROENDOCRINE TUMORS (NETS) Lung neuroendocrine tumors can cause symptoms when they block an airway, such as: 11. Cough. Wheezing. Shortness of breath. Chest pain. A functional neuroendocrine tumor, which releases hormones into the blood, may also cause a few other symptoms such as diarrhea or flushing in the face. 9. More info on lung NETs. NEUROENDOCRINE TUMOR PATIENT SUPPORT & ASSISTANCE NETRF does not provide patient financial assistance, but a few other nonprofit organizations do. National Organization for Rare Disorders (NORD) has a Patient Assistance Program for medication-specific assistance, disease-specific assistance, and clinical trial programs. Cancer Care is a national nonprofit organization that provides free, professional support services to anyone affected by cancer. LIVING WITH NEUROENDOCRINE TUMORS Find support groups in your area. Check out patient advocacy groups. 2 Singh S, Granberg D, Wolin E, et al. Patient-reported burden of a neuroendocrine tumor (NET) diagnosis: results from the first global survey of patients with NETs. J Glob Oncol. 2016;2 (1):43-53. 1 EPISODE 14: PHEOS & PARAS TRANSCRIPT 6 Episode 14: Pheos & Paras Transcript Nancy Sharma, a Medical Oncologist at Swedish Cancer Institute in Seattle, Washington: Sharma: “Even if people are not symptomatic, based on the amount of catecholamines being produced, they still are EPISODE 4: NUCLEAR MEDICINE FOR NETS: WHAT IS PRRT? Treating NETs with Nuclear Medicine This episode of NETRF’s NETWise podcast discusses Peptide Receptor Radionuclide Therapy (PRRT) a targeted form of radiotherapy approved in the U.S. in 2018. Listen in as NET experts like Josh Mailman, Drs. George Fisher, Thor Halfdanarson, Ed Wolin, Richard Baum, and others explain what it is,how it works, and
SHE DOESN'T LOOK LIKE SHE HAS CANCER Dr. Elizabeth Zide vs. Neuroendocrine Cancer Members “Nothing But NET” marathon relay team. (left to right) Elizabeth Zide, Alaina Kronenberg, and Cassi Cohen. Her lifestyle is the model of health and wellness. Elizabeth R. Zide, MD, eats an organic farm-to-table diet, swings kettlebells, and practices nutrition-based holistic medicine. Even still, she is among the thousands GALLIUM-68 (GA-68) PET/CT Ga-68 dotatate is a radiopharmaceutical tracer used during PET (positron emission tomography) scans. Some PET/CT combination scanners also run a CT (computed tomography) scan in the same session and then merge the images together. The Ga-68 PET/CT full-body scan can capture neuroendocrine tumors (NETs) that overexpress somatostatin receptors __ Get COVID-19 Information »* News
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THE NEUROENDOCRINE TUMOR RESEARCH FOUNDATION (NETRF) OFFERS INFORMATION AND EDUCATION TO THOSE WITH NEUROENDOCRINE TUMORS. NETRF IS THE LEADING PRIVATE FUNDER OF RESEARCH INTO CAUSES AND TREATMENTS OF NEUROENDOCRINE TUMORS (NETS) IN THE SEARCH FOR A CURE. HOW WE WORK TO END NETSLearn More
DEDICATED TO CURING NEUROENDOCRINE TUMORS$26M
MILLION in NET research funding93%
OF REVENUE goes to research and programs30
ONGOING STUDIES in 8 countries SPARK HOPE FOR THOSE WITH NEUROENDOCRINE TUMORS Your gift can help improve, extend, and save lives.Donate Now
MISS FLORA TO THE RESCUEApril 28, 2020
Like a superhero to the rescue, Flora Whitmore’s virtual playground emerged on Facebook to help children and parents through a difficulttime.
THE HEALING ABILITY OF MUSICApril 13, 2020
Tom Bajoras, a West Coast musician is taking advantage of gaps in his schedule to compose music to support his and your journey with NETs. NEW MEMBERS BOARD OF DIRECTORSApril 13, 2020
NETRF welcomes two leaders to its Board of Directors. Julie Mebane, Partner, Duane Morris, LLP, and Laurie Rains, Senior Vice President, U.S. Retail Services, Convenience and Liquor Channels, Neilsen. Learn how these new Board members hope to help those living with NETs.(MORE)
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NETRF hosts full-day free patient and caregiver neuroendocrine tumor conferences to educate and empower individuals to be part of their care planning and live their best life.View events page
NEXT UPCOMING EVENT: NET PATIENT AND CAREGIVER CONFERENCESBOSTON, OCTOBER 6
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