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Learn more about the Neuroendocrine Cancer Foundation's mission to provide a community of support and education for patients (those with neuroendocrine cancer), history, and community. About the Neuroendocrine Cancer Foundation MISSION STATEMENT The mission of the Neuroendocrine Cancer Foundation is to provide a community of support and education for patients (those with neuroendocrine cancer or neuroendocrine tumor or NET) and to advocate for all people impacted by this rare disease by expanding awareness and by voicing the patient’s perspective in collaborative dialogue with healthcare professionals. We aim to improve the quality of life of those with neuroendocrine cancer by offering support and expanded access to information on diagnosis, treatment options, research, and resources. The Neuroendocrine Cancer Foundation makes it possible for patients to share experiences, encouragement, and hope. We work to improve outcomes for patients through early diagnosis by raising awareness among healthcare professionals and the public about neuroendocrine and carcinoid cancers. HISTORY Giovanna Joyce Imbesi , a NET patient and patient advocate, founded a non-profit organization named GeneratePossibility in 2012. She launched Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) to offer Patient Education Speaker Series. Since 2012, LACNETS has presented leading NET experts in oncology, gastroenterology, radiology, nuclear medicine, clinical trials, pain management, surgery, and psychiatry and has addressed patient concerns about insurance coverage and nutrition. Starting in 2014, the patient educational programs are recorded for a global audience and posted on the LACNETS YouTube Channel. In November 2022, LACNETS changed its name to Learn Advocate Connect Neuroendocrine Tumor Society, keeping the acronym to reflect the intent for the NET community to learn, advocate and connect. In March 2025, the organization chose "Neuroendocrine Cancer Foundation" as its name to better represent the organization it is today and the broader community it serves. Although the Neuroendocrine Cancer Foundation will expand its reach and provide more access to educational resources, experts, and support, its commitment to the Neuroendocrine Cancer Community remains steadfast and reaffirmed. Contact: info@ncf.net The Neuroendocrine Cancer Foundation is a 501(c)(3) California non-profit corporation. All or part of your donation may be tax deductible as a charitable contribution.

Our Vision The Vision initiative is in memory of Giovanna Joyce Imbesi, the late founder of LACNETS (now Neuroendocrine Cancer Foundation), whose vision was to empower neuroendocrine cancer patients and caregivers by providing a healing exchange of educational resources. The Neuroendocrine Cancer Foundation provides education, advocacy, and support through its programs, which play a key role in treatment decisions. Giovanna left behind a profound legacy. The Neuroendocrine Cancer Foundation has a great responsibility to help sustain this organization and keep her vision alive due to the impact she had on the neuroendocrine cancer community. The Neuroendocrine Cancer Foundation invites you to participate in our vision initiative supporting neuroendocrine cancer patients and their loved ones. Be a part of the healing. Make a difference today! Large or small, every gift matters and is genuinely appreciated. Your generous contribution will go towards funding the Neuroendocrine Cancer Foundation's greatest needs, such as the production of our educational webinars, podcasts, and conferences. Donate to the Neuroendocrine Cancer Foundation to carry on Giovanna's legacy and vision. Thanks to the generosity of a few committed donors, your gift will be matched dollar for dollar. Help Fund the Vision Watch the tribute video honoring Giovanna Joyce Imbesi by Rich Tamayo, Emmy Winning Video Producer & a friend In Loving Memory Giovanna Joyce Imbesi Our founder, hero & inspiration to live life fully… Giovanna Joyce Imbesi, LACNETS founder, was a patient advocate, pianist, and composer based in Los Angeles. She lived fully with neuroendocrine cancer for 14 years and served as a model of compassion, love and kindness. In 2005, after several years of misdiagnosis, Giovanna was diagnosed with metastatic small bowel neuroendocrine cancer. She understood that those with a rare cancer may feel isolated, and sharing similar experiences may lessen the fear of the unknown and offer comfort. It became her mission to help others in the NET community. Her vision was to create a community for a healing exchange of educational resources and emotional support for all affected by neuroendocrine cancer. Against all odds, Giovanna went on to receive an MBA from UCLA Anderson School of Management with the sole intent of launching LACNETS. In 2012, she founded the non-profit GeneratePossibility and the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) program. Giovanna's physician, Dr. Edward Wolin, was the inaugural speaker for the first LACNETS' patient education meeting. Through LACNETS, Giovanna's aspiration was to create a more "NET-fluent" world. She wanted to change the narrative from associating NET with famous people who die from the disease to raising awareness of the more than 180,000 people who live with the disease. Giovanna wrote, "Each one of us has the ability to help change those numbers in our own community. There are more opportunities to share more about NET and add one more person to the extended global family of NET awareness." Giovanna helped create tools, such as NET VITALS, to improve communication between patients and physicians. She believed that increased awareness equates to more research, which leads to improved treatments and patient outcomes. Giovanna received the 2016 Monica Warner Advocacy Award, as well as the 2019 Cedars-Sinai Patient Leadership Award , for her inspiring work in patient advocacy. Giovanna Joyce Imbesi passed away peacefully on November 24th, 2019. On her last day, Giovanna said with great pride that her greatest legacy was LACNETS. She felt blessed by this community. Giovanna often said, "Aging is a privilege." She celebrated life and connectedness. She believed in practicing gratitude, even appreciating the difficult times. She was grateful for the thousands of neuroendocrine tumor physicians, researchers and healthcare providers who work on the behalf of NET patients every day. The Neuroendocrine Cancer Foundation works daily to honor Giovanna's vision by serving the NET community she established and helping others to live life richly and fully with NET like she did. Participate in the Vision GENERATE POSSIBILITY For Giovanna, music was medicine. Her musical compositions can be heard on "Short Stories - piano music for healing, meditation & relaxation" recorded while in recovery from neuroendocrine cancer surgery. These pieces were inspired by her belief in the healing power of music as a vital element of our well-being. She frequently contributed music to NET causes. A frequent speaker on living with neuroendocrine cancer and the healing power of music, Giovanna was featured as one of six leaders in Integrative Cancer Care at the 2018 Symington Public Forum at Commonweal. We hope that Giovanna's song and her own words, "Give Me Peace," bring some comfort and peace. I’ll always be grateful for Giovanna and her work through LACNETS (now Neuroendocrine Cancer Foundation). The information I learned and connections I made through the educational meetings changed the course of my medical care and helped me to get back to a place where I could enjoy life. — Tom, NET Patient

Learn more about the NET experts presenting on various topics during the 2023 LACNETS Neuroendocrine Tumor Patient Conference. 2023 LACNETS Conference Speakers NETS 101: OVERVIEW OF NET TERMS & CONCEPTS AMAN CHAUHAN, MD Medical Oncologist, University of Miami Aman Chauhan, MD, earned his medical degree from the Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. Dr. Chauhan completed his fellowship in hematology and oncology at the University of Kentucky, especially focusing on neuroendocrine tumor (NETs). Additionally, Dr. Chauhan completed a Cancer Therapy Evaluation Program (CTEP) physician externship at the National Cancer Institute (NCI) that focused on designing clinical trials and clinical research projects. His clinical interests include treating NETs, including carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. Dr Chauhan leads the University of Miami Neuroendocrine Cancer Program and co-leads Sylvester Theranostics Drug Development Program. He is national principal investigator on several investigator initiated neuroendocrine cancer clinical trials. He has authored over 70 scientific publications and book chapters and has received career development award from NCI CTEP. Dr Chauhan also serves on AJCC and ASCO NET guideline committees and is an active member of NANETS communication committee. Dr. Chauhan is board certified in internal medicine and medical oncology. He is a member of the American Society of Clinical Oncology as well as the American Association of Cancer Research and the North American Neuroendocrine Tumor Society. A CONVERSATION WITH THREE NET SURGEONS CALLISIA CLARKE, MD Surgical Oncologist, Medical College of Wisconsin Dr. Callisia N. Clarke completed her medical degree at the University of Cincinnati College of Medicine where she was elected to the Alpha Omega Alpha Honors Society. She completed a general surgery residency at the University of Cincinnati Medical Center in Cincinnati, Ohio in 2013 and a fellowship in Complex General Surgical Oncology at The University of Texas MD Anderson Cancer Center in 2016. She joined the faculty at the Medical College of Wisconsin in 2016 as an Associate Professor of Surgery in the Division of Surgical Oncology. Dr. Clarke specializes in hepato-pancreatic-biliary malignancies, melanoma and sarcoma, with her research efforts centered on epigenetic regulation of Neuroendocrine Tumors. She holds numerous leadership positions in national organizations including the American Hepato Pancreato-Biliary Association, the Association for Academic Surgery, the North American Neuroendocrine Tumor Society, and the Society of Surgical Oncology. ALEXANDRA GANGI, MD Surgical Oncologist, Cedars-Sinai Medical Center Dr. Alexandra Gangi is a board-certified surgical oncologist at Cedars-Sinai Medical Center in Los Angeles. Dr. Gangi completed a general surgical residency at Cedars-Sinai and completed her surgical oncology fellowship at the H. Lee Moffitt Cancer Center in Tampa, Florida. She currently serves as the director of the Gastrointestinal Tumor and Cancer Regional Therapies Programs with specialization in Pancreatic and GI Neuroendocrine tumors, Metastatic colorectal cancer, and Peritoneal Surface Malignancies. Her research focuses on understanding GEPNET heterogeneity between and within tumors subtypes and mechanisms of chemotherapy induced liver injury. DANIEL ANAYA SAENZ, MD Surgical Oncologist, Moffitt Cancer Center Dr. Daniel Anaya is a Senior Member, Chief of GI Surgery and Head of Hepatobiliary Section in the Department of Gastrointestinal Oncology, at Moffitt Cancer Center. Dr. Anaya is a fellowship trained Surgical Oncologist with a particular focus on the surgical treatment of patients with liver malignancies (primary and metastatic) and neuroendocrine tumors. His academic interests focus on improving the quality of cancer care and implementing models to improve the delivery of care for patients with complex cancers. He is an expert in developing academic programs that facilitate the delivery of the highest quality of care, while also providing a framework to support research and innovation in the field of cancer and surgery. THE LATEST IN LIVER-DIRECTED THERAPY OSMAN AHMED, MD Interventional Radiologist, University of Chicago Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage. In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology. Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology. THE LATEST IN NET IMAGING NADINE MALLAK, MD Radiologist & Nuclear Medicine, Oregon Health & Science University Nadine Mallak, MD is an Associate Professor of Diagnostic Radiology at Oregon Health and Science University (OHSU), in the divisions of Body Imaging, and Molecular Imaging and Therapy. She is the clinical director of the PET/MRI program at OHSU. The scope of her clinical practice encompasses all aspects of molecular imaging and therapy, in addition to abdominal and pelvic imaging with modalities including ultrasound, CT, and MRI. Her research interests focus on molecular and hybrid imaging, particularly for neuroendocrine tumors and prostate cancer. THE LATEST IN PRRT CARINA MARI APARICI, MD Radiologist & Nuclear Medicine, Stanford University Health Care Mari Aparici, MD is a Clinical Professor in Radiology at Stanford University. She is a Nuclear Physician with residencies in both Europe (Barcelona) and US (Stanford), and with Molecular imaging fellowships from Stanford University. After her training, she joined the Faculty at UCSF where she became a Clinical Professor in Radiology. Dr Mari Aparici is a physician-scientist in the development of Molecular Imaging and therapies. She has more than 20 years of clinical and research experience in the field and now serves as the Director of the Targeted Radionuclide Therapy Program/Theragnostics Clinic at Stanford University. She has published more than 100 papers, serves as an editorial board member of reputed journals, is PI of NIH and non-NIH grants and serves as a member/chair of several committees at her University and Societies related to her medical specialty. THE LATEST IN SYSTEMIC TREATMENTS & CONSIDERATIONS FOR TREATMENT SEQUENCING PAMELA KUNZ, MD Medical Oncologist, Yale Cancer Center Dr. Pamela Kunz is an Associate Professor of Medicine in the Division of Oncology at Yale School of Medicine and Director of the Center for Gastrointestinal at Yale Cancer Center and Smilow Cancer Hospital. She received her medical degree from the Dartmouth Geisel School of Medicine. Her postgraduate training included a medical residency, chief residency and oncology fellowship at Stanford University School of Medicine. Dr. Kunz is an international leader in the treatment and clinical research of patients with gastrointestinal (GI) malignancies and neuroendocrine tumors (NETs). She holds key leadership positions in the field including Chair of the Neuroendocrine Tumor Taskforce of the NCI and vice president of the North American Neuroendocrine Tumor Society. In addition, she has emerged as a leading voice for promoting gender equity in the medical workforce and serves as the Vice Chief for DEI for the Section of Medical Oncology at Yale. She was recently awarded the Woman Oncologist of the Year by Women leaders in Oncology. THE LATEST IN NET CLINICAL TRIALS SIMRON SINGH, MD Medical Oncologist, Sunnybrook Health Sciences Center Dr. Simron Singh is an Associate Professor of Medicine, at the University of Toronto and co-founder of the Susan Leslie Clinic for Neuroendocrine Cancers at the Odette Cancer Centre Sunnybrook Health Sciences Centre. In addition, he is a principal investigator and associate scientist with the Institute for Clinical Evaluative Sciences and Sunnybrook Research Institute. He completed his B. Sc as well as MD at University of Alberta in Edmonton, Alberta. He completed postgraduate training in Internal Medicine at Queens University in Kingston, Ontario, Canada and Medical Oncology at the University of Toronto. After completing his clinical training, Dr. Singh completed his Master's degree in Public Health from Harvard University in Boston, MA, USA. In 2013, Dr. Singh joined Cancer Care Ontario/Ontario Health (CCO/OH) as the Provincial Head, Person-Centred Care Strategy, responsible for the development and execution of CCO corporate strategic priority around person-centred care. He’s had numerous other board and administrative roles both at the national and international level. Dr. Singh is the symposium chair for the North American Neuroendocrine Tumor Society as well as the co-chair of the Commonwealth Neuroendocrine Tumour Group. He is the Canadian Clinical Trial group NET disease site group co-chair, as well as on the European Neuroendocrine Tumour Society advisory board. He currently is the co-chair of the Neuroendocrine Advisory Committee at Cancer Care Ontario which has been able to bring PRRT and Ga-68 imaging to Ontario. Dr. Singh is an internationally recognized clinical and research leader in the field of neuroendocrine cancers. He is a leader in health services research and system level quality improvement and measurement. Dr. Singh has been published in numerous high impact journals such as Lancet, Lancet Oncology, JAMA Oncology and the Journal of Clinical Oncology as lead or senior author. He has been the primary author of numerous guidelines to improve the care of NET patients. He holds a number of peer reviewed grants as well as clinical trial leadership positions. Dr. Singh has numerous international speaking invitations as well as leads a number of research and quality initiatives to improve the ongoing care of patients with cancer. CLINICAL TRIALS: WHY, WHAT & HOW JOSH MAILMAN, MBA President, NorCal CarciNET Josh Mailman was diagnosed with PNET in 2007. Josh is an internationally recognized advocate for NET patients as well as an advocate for integrative oncology and nuclear medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, Board Member and Treasure of the Neuroendocrine Tumor Research Foundation (NETRF), a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. He is currently the sole patient rights advocate for the Nuclear Regulatory Commission’s Advisory Committee for the Medical Use of Isotopes (ACMUI). Josh is also a member of National Cancer Institute’s GI Steering Committee and serves as co-chair of the Patient Advocate Steering Committee. In 2015, Josh was honored with the Warner Advocacy Award, given annually by Novartis Oncology Patient Advocacy and The NET Alliance. The award recognizes an individual for leadership and advocacy for neuroendocrine patients. In the same year, Josh was given the SNMMI’s President’s Award for his work on behalf of patients in the nuclear medicine field. Josh is a former executive board member of the Society for Integrative Oncology (SIO) and was named SIO Patient Advocate of Year in 2010. Josh is a frequent and sought-after speaker for his passionate and highly informed perspective on how patients can effectively participate in the process of working with key stakeholders to improve treatments and advance progress for better quality of life and eventual cures. MODERATORS ANDREW HENDIFAR, MD Medical Oncologist, Cedars-Sinai Medical Center The current research focus of Andrew Hendifar, MD, is on developing new therapies for pancreatic cancer and neuroendocrine tumors. Dr. Hendifar has helped form multidisciplinary teams that specialize in the treatments of pancreatic cancer, and carcinoid and neuroendocrine tumors. Dr. Hendifar is the primary investigator for several groundbreaking therapies, including radioimmunotherapy for neuroendocrine tumors, anti-inflammatory therapy for pancreatic cancer and novel approaches to cancer cachexia. His national roles include SWOG GI Committee Member and a member of NIH Neuroendocrine Tumor Task Force. He also serves as the steering committee member for the Precision Promise Consortium and chairs the associated Supportive Care Committee. At Cedars-Sinai, he leads the Gastrointestinal Disease Research Group and is the founding Director of the Hematology and Oncology Fellowship Program. DANENG LI, MD Medical Oncologist, City of Hope Daneng Li, M.D., is an associate professor in the Department of Medical Oncology & Therapeutics Research at City of Hope Comprehensive Cancer Center, specializing in treating gastrointestinal cancers. Dr. Li currently leads the liver tumors program and is also the co-director of the Neuroendocrine Tumor Program at City of Hope. Dr. Li embraces a multidisciplinary approach to treatment of patients with neuroendocrine tumors. He leads several clinical trials focused on improving outcomes for patients with NETs and works closely with scientists in the development of the next generation of novel therapeutics. Nationally, he has served on several NET committees including the NANETS Research Committee, NANETS Continuing Medical Education Committee, and the Patient-Physician Communication Task Force for the Healing NET Foundation, allowing him to work closely to support NET patient advocacy programs. For all his efforts, he was honored as a recipient of the inaugural 40 Under 40 in Cancer Award during the American Society of Clinical Oncology annual meeting in 2018. MARY DONLEVY LACNETS Board member and NET Patient Advocate Mary Donlevy joined the LACNETS Board in 2020. She brings the patient perspective as she has been thriving despite living with pancreatic neuroendocrine tumor since 2005. She has been close friends with LACNETS Founder Giovanna Joyce since 2010 and involved with LACNETS since then. Mary has served as a NET CONNECT mentor and Advisory Committee member. She has been actively involved in the monthly meetings and virtual NET support groups. Mary received her Bachelor's Degree in Communications from University of San Diego and has over 10 years of medical and sales training. Her passion is to help those dealing with this difficult diagnosis and still enjoy a very full and active life. She is the mother of four children, two of which are identical twins, born after her cancer diagnosis. Mary enjoys ocean swimming, yoga and traveling with her husband and children in her free time. << Go back to the 2023 Annual Conference Page

Save the Date - June 17, 2023 Watch the 2023 LACNETS Neuroendocrine Tumor Patient Conference 2023 LACNETS Neuroendocrine Tumor Patient Conference 2023 LACNETS Neuroendocrine Tumor Patient Conference Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing Welcome & Introduction • 2023 LACNETS Neuroendocrine Tumor Patient Conference • June 17, 2023 13:08 Play Video Now Playing NETS 101: Overview of NET Terms & Concepts • Dr. Aman Chauhan • 2023 LACNETS Patient Conference 21:51 Play Video Now Playing A Conversation with Three NET Surgeons • Dr. Clarke, Dr. Gangi & Dr. Anaya • 2023 LACNETS Conference 27:33 Play Video Join us virtually for our biggest event of the year to hear from 12 NET experts from North America. Click Here to Read Speaker Bios Visit Sponsor Booths 2023 Conference Sponsors VISIT SPONSOR BOOTHS IPSEN Booth TerSera Booth Curium Booth AAA Booth Crinetics Booth Camurus Booth The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.

NET Quiz TEST YOUR NET KNOWLEDGE QUIZ #31 - UNDERSTANDING FATIGUE & NETS Here’s a short quiz based on NETRF's NETWise Podcast Episode 30: "Understanding Fatigue & NETs." TAKE THE QUIZ QUIZ #30 - MERKEL CELL NETS Here’s a short quiz based on NETRF's NETWise Podcast Episode 29: "Merkel Cell NETs." TAKE THE QUIZ QUIZ #29 - NETS & RACE Here’s a short quiz based on NETRF's NETWise Podcast Episode 27: "NETs & Race." TAKE THE QUIZ QUIZ #28 - GYNECOLOGIC NETS Here’s a short quiz based on NETRF's NETWise Podcast Episode 24: "Gynecologic NETs." TAKE THE QUIZ QUIZ #27 - PARENTING WITH NETS Here’s a short quiz based on NETRF's NETWise Podcast Episode 23: "Parenting With NETs." TAKE THE QUIZ QUIZ #26 - ADJUSTING TO & NAVIGATING THE NEW NORMAL Here’s a short quiz based on NETRF's NETWise Podcast Episode 21: "Adjusting to the New Normal" and Episode 22: "Navigating the New Normal." TAKE THE QUIZ QUIZ #25 - NET RESEARCH (PART 2) Here’s a short quiz based on NETRF's NETWise Podcast Episode 20: “NET Research – Part Two.” TAKE THE QUIZ QUIZ #24 - NET RESEARCH (PART 1) Here’s a six question quiz based on NETRF's NETWise Podcast Episode 19: “NET Research – Part One.” TAKE THE QUIZ QUIZ #23 - HIGH-GRADE NETS AND NECS Here’s a five question quiz based on NETRF's NETWise Podcast Episode 18: “High-Grade NETs and NECs.” TAKE THE QUIZ QUIZ #22 - LIVER NETS Here’s a five question quiz based on NETRF's NETWise Podcast Episode 17: "Focus on Liver NETs." TAKE THE QUIZ QUIZ #21 - NETS AND NUTRITION Here’s a five question quiz based on NETRF's NETWise Podcast Episode 16: “NETs and Nutrition.” TAKE THE QUIZ QUIZ #20 - SUPPORTIVE CARE FOR THE MIND, BODY, AND SOUL Here’s a five question quiz based on NETRF's NETWise Podcast Episode 15: “Supportive Care for the Mind, Body, and Soul.” TAKE THE QUIZ QUIZ #19 - PHEOS & PARAS Here’s a six question quiz based on NETRF's NETWise Podcast Episode 14: “Pheos & Paras.” TAKE THE QUIZ QUIZ #18 - NETS AND GENETIC SCREENING Here’s a six question quiz based on NETRF's NETWise Podcast Episode 13: “NETs and Genetic Screening.” TAKE THE QUIZ QUIZ #17 - THE IMPORTANCE OF CAREGIVING Here’s a five question quiz based on NETRF's NETWise Podcast Episode 12: "The Importance of Caregiving." LACNETS’ Program Director and a NET caregiver, Lisa Yen, is a guest on this episode! TAKE THE QUIZ QUIZ #16 - AYA (ADOLESCENTS & YOUNG ADULTS) AND NETS Here’s a four question quiz based on NETRF'w NETWise episode 11, "AYA (Adolescents and Young Adults) and NETs." TAKE THE QUIZ QUIZ #15 - SMALL BOWEL NETS Here’s a five question quiz based on NETRF'w NETWise special episode, "Small Bowel NETs.” TAKE THE QUIZ QUIZ #14 - PANCREATIC NETS Here’s a seven question quiz based on NETRF's NETWise episode #10, “Pancreatic NETs.” TAKE THE QUIZ QUIZ #13 - LUNG NETS Here’s a six question quiz based on NETRF's NETWise special episode, “Lung NETs.” TAKE THE QUIZ QUIZ #12 - CLINICAL TRIALS Here’s a six question quiz based on NETRF's NETWise podcast episode, “Clinical Trials.” TAKE THE QUIZ QUIZ #11 - MANAGING SYMPTOMS OF NETS Here’s a seven question quiz based on NETRF's NETWise podcast episode, “Managing Symptoms of NETs.” TAKE THE QUIZ QUIZ #10 - MEDICAL MANAGEMENT OF NETS Here’s a seven question quiz based on NETRF's NETWise podcast episode, “Medical Management of NETs: Understanding SSAs, Chemotherapy, and Targeted Therapy” . TAKE THE QUIZ QUIZ #9 - NUCLEAR MEDICINE FOR NETS: WHAT IS PRRT? Here’s a quick six question quiz based on NETRF's NETWise podcast episode, “Nuclear Medicine for NETs: What is PRRT?” TAKE THE QUIZ QUIZ #8 - COVID-19 AND NETS Here’s a quick seven question quiz based on NETRF's NETWise podcast episode, “COVID-19 and NETs.” TAKE THE QUIZ QUIZ #7 - SURGERY AND INTERVENTIONAL RADIOLOGY FOR NETS Here’s a six question quiz based on the NETRF's NETWise podcast episode #3, “Surgery and Interventional Radiology for NETs.” TAKE THE QUIZ QUIZ #6 - IMAGING, TESTING, & BUILDING A CARE TEAM (PART 2) Here’s a six question based on NETRF's NETWise podcast episode #2: “Imaging, Testing, and Building a Care Team.” TAKE THE QUIZ QUIZ #5 - IMAGING, TESTING, & BUILDING A CARE TEAM (PART 1) Here’s a quick five question quiz based on NETRF's NETWise podcast episode #2: “Imaging, Testing, and Building a Care Team.” TAKE THE QUIZ QUIZ #4 - WHAT YOU NEED TO KNOW ABOUT NETS We put together a quick quiz based off of the first episode of NETRF’s NETWise podcast, “What You Need to Know About NETs. ” TAKE THE QUIZ QUIZ #3 - REVIEW NET BASICS Review your NET basics by taking this five question quiz! This quiz is just a fun way to learn! If you get it wrong, don't stress! Now you know the correct answer! TAKE THE QUIZ QUIZ #2 - LEARN TO SPEAK NET LACNETS put together a quick five question quiz to help you learn to speak NET! TAKE THE QUIZ QUIZ #1 - TEST YOUR KNOWLEDGE ON NET In honor of Rare Disease Day 2019, LACNETS put together a quick four-question quiz to test your knowledge on neuroendocrine cancer! TAKE THE QUIZ

Symptom Management < Back to Topics Play Video Play Video 01:33:48 LACNETS • "Symptom Management" with Dr. David Metz • Oct 2023 Join LACNETS to hear Neuroendocrinologist, Dr. David Metz from University of Pennsylvania discuss symptom management. The presentation will cover carcinoid syndrome, pancreatic enzymes, bile acid secretion, and short bowel syndrome. He will explain current treatments, supplements, and diets that might be helpful to control NET-related symptoms. For more information, visit LACNETS.org. Play Video Play Video 21:13 13. Managing NET Symptoms & Treatment Side Effects (Dr. Sandy Kotiah) - 2022 LACNETS Conference Dr. Sandy Kotiah addresses the management of #NET symptoms and treatment side effects. Speaker: Sandy Kotiah, MD Medical Oncologist, Mercy Medical 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 05:17 Patient Story: NET Patient shares how she is thriving as a NET patient (LACNETS) NET Patient Cindy shares how she is thriving as a NET patient. November 7, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 04:26 Patient Story: NET Patient shares about symptom management (LACNETS) NET Patient Brent shares about symptom management. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 06:00 11. Patient Story about Symptom Management (Val) - 2021 LACNETS Virtual Conference NET Patient Val shares her experience with symptom management and NETs. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:02:18 LACNETS - "Pain Management for NETs" Dr. Najmeh Sadoughi Dr. Najmeh Sadoughi "Multidisciplinary Approaches to Pain Management for Neuroendocrine Tumors" Najmeh Sadoughi, MD Board Certified Interventional Pain Specialist LACNETS Patient Education Seminar January 9, 2018 UCLA Los Angeles, California LACNETS is a program by Generate Possibility, a 501(c)(3) non-profit corporation. Los Angeles Carcinoid Neuroendocrine Tumor Society www.LACNETS.org Play Video Play Video 01:38:07 LACNETS Webinar: "Management of Diarrhea in NETs” with Dr. Shirley Paski Management of Diarrhea in NETs” with Dr. Shirley Paski Recorded on October 13th, 2020 Speaker: Shirley Paski, MD, IM/Gastroenterology, Cedars-Sinai Medical Center Learn more here: www.LACNETS.org Audio/Video - www.TVPlive.com Play Video Play Video 49:02 Symptom Management: Diarrhea, Hyperglycemia & Diabetes - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: "Patient Story" (0:00 - 6:30) Brent, NET Patient "Symptom Management: Diarrhea" (6:30 - 29:05) David C. Metz, MD, Gastroenterology Penn Medicine "Symptom Management: NET-related Hyperglycemia and Diabetes" (29:05 - end of video) Run Yu, MD, PhD , Endocrinology UCLA Health For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 17:19 12. Symptom Management (Dr. Del Rivero) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Jaydira Del Rivero, MD Endocrinologist, Oncologist NIH This presentation is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 45:02 "Manejo Sintomatico de los Tumores Neuroedocrinos Funcionales" con Dr. Jaydira Del Rivero "Manejo Sintomatico de los Tumores Neuroedocrinos Funcionales" con Dr. Jaydira Del Rivero Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH Para obtener más recursos en español, visite www.LACNETS.org/spanish-resources. < Back to Topics Next Topic >

NET Intro - Your NET Elevator Speech The NET Intro card can be filled out digitally using a PDF editor or printed and filled out. DOWNLOAD THE NET INTRO CARD Esta página también está disponible en español, se encuentra aquí. WHAT IS A NET ELEVATOR SPEECH? An elevator speech is a way of introducing yourself. The reason it’s called an “elevator speech” is because it should be short enough to say during a brief elevator ride. We define a NET elevator speech as a two-sentence synopsis of your NET cancer which can be communicated in 30 seconds or less. If you were in an elevator with a NET expert and had only 30 seconds, your NET elevator speech is your concise two-sentence introduction that relates the most important things they need to know about your disease. This is your NET Intro, the way you introduce yourself to someone who doesn’t yet know your NET history. Your NET elevator speech consists of two sentences, and contains items #2-6 on page 1 of NET VITALS . SENTENCE #1: 1. Your relationship to NET: If you are living with NET, you might start the sentence with: “I am living with…” “I was diagnosed with…” If you are an ally or loved one of someone living with NET, you might start the sentence with: “My spouse/child/parent/relative/friend/other relation is living with…” “My spouse/child/parent/relative/friend/other relation was diagnosed with…” Note: Because we believe words are powerful, we discourage identifying yourself as a patient or by the disease. Instead, we encourage using “I am living with” or “I was diagnosed with” or “I was diagnosed X year with…” or even “I have…” Some people even say “I am living well with…” because it gives the message that people can thrive while living with NETs. 2. Tumor differentiation: This is either "well differentiated" or "poorly differentiated.” It refers to how abnormal the cells look when compared to the surrounding healthy, non-cancer cells under the microscope. 3. Tumor grade: This is grade 1, 2, or 3. If you know your ki-67, you can add this element, as it determines the grade of the tumor. This refers to how quickly the tumor cells are dividing. It can be found on your pathology report, a report that is done whenever tissue is taken from your body, usually from a biopsy or surgery. Grade is different from stage which refers to how far the cancer has travelled from the original site of the tumor. It’s easy to confuse grade with stage, but they actually say very different things. The general public is familiar with staging, because it is a common way to describe a cancer and gives an idea of someone’s prognosis. However, it’s important to remember that stage 4 with neuroendocrine cancer does not mean the same thing as stage 4 with other cancers. Please note that lung NETs are not classified by grade; they are classified as typical carcinoma, atypical carcinoma, large cell neuroendocrine carcinoma, and small cell carcinoma. Pheochromocytomas and paragangliomas are also not classified by grade. NETWise Infographic Stage, Differentiation & Grade, courtesy of Neuroendocrine Tumor Research Foundation - Download Here Lung NET infographic, courtesy of Neuroendocrine Tumor Research Foundation - Download here Lung NET resources can be found here. 4. Functional status of the tumor: This is either functional or nonfunctional. This means specifically whether the tumors produce hormones (functional), or they do not produce hormones (nonfunctional). This is different from stating if you experience symptoms, since symptoms could be from a variety of reasons. This specifically refers to whether or not your tumors produce hormones that cause symptoms. 5. Site of tumor origin and metastases: This is where your tumor originates from (i.e. pancreas, small intestine, lung, colon, etc.) and anywhere else it might be located (i.e. liver, bones, etc.). The primary site of your tumor remains the same even after it has been removed and even if you no longer have evidence of disease. One reason the primary site of your tumor is important is that it helps your doctor determine what treatment options are available and best suited for you. 6. Year of diagnosis (optional) This is my example of sentence #1: "My husband has been living with well-differentiated, Grade 2 (ki-67 15) nonfunctional pancreatic NET with metastases to the liver and bones since 2015.” "My husband was diagnosed in 2015 with well-differentiated, Grade 2 (ki-67 15) nonfunctional pancreatic NET that has metastasized to the liver and bones.” SENTENCE #2: Sentence #1 is foundational. Once you’ve mastered sentence #1, then -- and only then-- are you ready to build on it by adding sentence #2. Most of us have an easier time with sentence #2 because we usually know what treatments we’ve had. Sentence #2 consists of a brief summary of your surgeries and treatments. The key here is to be succinct. This is my example of sentence #2: “My husband has had surgery, somatostatin analog (lanreotide or octreotide), liver directed therapy, and PRRT.” There it is—your NET story as a brief two-sentence NET Intro that takes less than 30 seconds. While it may sound simple, we recognize that building your elevator speech may not be easy. Furthermore, it takes work and practice to become comfortable delivering your elevator speech. Write it down. Have it handy. Then practice, practice, practice ! It takes repetition to become fluent in this new language so it rolls easily off the tongue. WHAT ARE THE BENEFITS OF LEARNING YOUR NET INTRO? You are learning to “speak NET” so you’re on the same page as a NET expert. By sharing your NET elevator speech, you are communicating the critical elements that they need to know to guide treatment decisions. It’s important that YOU know and understand your own disease, and don’t just rely on your medical team to do so. Learning to speak NET helps you know what information or treatments are relevant to you. When you participate in educational meetings, you might be better able to interpret and apply the information. When you look at clinical trials, you might be better able to understand whether you are a candidate for certain trials. It helps you communicate the essential elements of your neuroendocrine cancer concisely, clearly, and efficiently. Communicating the critical elements of the disease efficiently means that time can be better spent on other things such as talking about treatments or getting your questions answered. This might be in a support group setting or with others living with NETs. This might be when speaking to your NET expert at a medical appointment or perhaps a NET expert you meet at an educational conference. Using your NET elevator speech, you can speak NET to better communicate your “NET VITALS.” WHAT SHOULDN’T BE IN YOUR NET INTRO? Words are powerful. We discourage people from identifying themselves or their loved ones as a patient or as a disease. We want to use words that empower and that show we view ourselves as whole people rather than being defined by an illness. Note that your NET Intro is not the same thing as your story. There is a time and a place for telling your story of how you were diagnosed and how NET has impacted you personally. Giving an elevator speech does not replace telling your story; it is a different skill that serves a different purpose. Knowledge is powerful! In this rollercoaster journey where things may sometimes feel out of control, here is something you can control. Learning your NET elevator speech helps you to communicate in the language of NET experts. We can be better patients and advocates by bridging our knowledge gaps and understanding foundational NET terms and concepts. Now go forth and build your own NET elevator speech. Let’s learn to “speak NET” together! DOWNLOAD THE NET INTRO CARD The NET Intro card can be filled out digitally or printed and filled out. Esta página también está disponible en español, se encuentra aquí. RESOURCES If you're not sure what the above terms mean or how to find the differentiation, grade, or ki-67 on your pathology report, we recommend the following resources: NETRF’s NETWise infographic “Stage, Differentiation, & Grade” NETRF’s NETWise podcast Episode 1: What You Need to Know About NETs NET VITALS webinar (starting @14:20) Pathology webinar by Dr. Sue Chang (starting @ 36:43) Symptom Management presentation by Dr. Del Rivero (covers functional tumors and management of carcinoid syndrome) NOTE: NET Intro is a document for personal use only. It is not submitted to nor collected by LACNETS. It is a document for you to fill out and take with you to your physician appointment. This document is intended for informational and educational purposes only and is not a substitute for professional medical advice. Always consult with your physician or health care provider.

SSAs (Somatostatin Analog Therapies) READ CLICK HERE FOR AN EXCELLENT SUMMARY OF SSA'S BYNFEZIA PEN™ (OCTREOTIDE ACETATE) INJECTION COPAY ASSISTANCE - BYNFEZIA PEN™ (OCTREOTIDE ACETATE) Read 'Practical Tips for Patients on "The Shot" LISTEN Podcast Episode 32: Focus on Somatostatin Analogues (SSAs)

Be Inspired < Back to Topics Above & Beyond Awards Above & Beyond Awards Play Video Play Video 04:33 @NCFCancer Above & Beyond Award: Tom, Musician/Composer & NET Patient • 2023 NET Cancer Day Symposium The Giovanna Joyce Imbesi Above & Beyond Award is given to individuals in recognition of outstanding dedication to NET patient advocacy. Recipients of this award demonstrate an attitude of excellence, awareness, and hope for the neuroendocrine cancer community. The award is in honor of the late founder of @NCFCancer, Giovanna Joyce Imbesi. In 2023, NET Patient, Musician and Composer Tom received the Above & Beyond Award for his dedication to patient advocacy. For more information, visit LACNETS.org. Play Video Play Video 03:45 7 - Above & Beyond Award with Michel DeQuevedo & Lisa Yen Honor NET Cancer Day with LACNETS! Three NET patient advocates, including one who is also a NET oncologist, who joins us for the 2022 Annual NET Cancer Day Virtual Symposium This year’s theme is, “Patient Perspectives on Making NET Decisions.” (Re-broadcast from original Live Webcast on on Wednesday, November 9) For more info, visit www.LACNETS.org. Play Video Play Video 09:36 2018 LA NET Conf 10 - LACNETS 2018 Above and Beyond Award LACNETS 2018 Above and Beyond Award Awarded to Beth DeBlase NET Patient Play Video Play Video 45:34 Patient Panel + Above & Beyond Award- 2019 LA NET Conf Patient Panel 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 05:56 2020 Giovanna Joyce Imbesi Above & Beyond Award (LACNETS) 2020 Giovanna Joyce Imbesi Above & Beyond Award December 8, 2020 2020 Recipient: Mary Donlevy, NET Patient To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 06:10 Announcing the recipient of the 2021 Giovanna Joyce Imbesi Above & Beyond Award Watch as we announce the recipient of the 2021 Giovanna Joyce Imbesi Above & Beyond Award. In memory of our late founder, this annual award is given to individuals who demonstrate outstanding dedication to NET patient advocacy. 2021 Recipient: Samuel Prentice Jr. To learn more about this award, visit www.lacnets.org/lacnets-above-beyond-award. Giovanna Joyce Imbesi, LACNETS Founder Giovanna Imbesi Play Video Play Video 10:07 Tribute Video: In Loving Memory of Giovanna Joyce Imbesi, LACNETS Founder Tribute Video honoring Giovanna Joyce Imbesi by Rich Tamayo, TVP Live, 12/10/2020 Learn more about Giovanna: https://www.lacnets.org/giovanna Inspirational Inspirational Play Video Play Video 46:54 "Riding the Cancer Wave – Spiritually Speaking" with Chaplain Michael Eselun TEDx speaker Michael Eselun, BCC of Simms/Mann UCLA joins LACNETS for his inspirational talk, "Riding the Cancer Wave – Spiritually Speaking." Michael explores the qualities he’s observed that help patients and families ride the cancer wave with greater ease. He shares what can sometimes happen when lifelong beliefs meet the challenge of cancer—to the religious and secular alike. Michael discusses how it is that we tend to find meaning in the unlikeliest of places—including on the cancer wave. To learn more about LACNETS, please visit www.LACNETS.org. Play Video Play Video 01:32:34 LACNETS Webinar: "How to Live with Neuroendocrine Cancer" with Dr. Eric Liu How do you navigate decisions in your NET journey? How do you learn to cope with your cancer diagnosis? How do you find your "new normal" and learn to thrive? Renowned NET Surgeon Dr. Eric Liu of Rocky Mountain Cancer Center addresses the importance of finding your NET team, prioritizing self-care, and how to let go of what you can't control. This video includes a presentation and Q&A. Speaker: Eric Liu, MD Surgeon, NET Specialist Rocky Mountain Cancer Center To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:12 12. Patient Story: From Diagnosis to Patient Advocacy - 2022 LACNETS NET Patient Conference Diagnosed with neuroendocrine cancer (NET) in 2021, NET patient Michel shares how the lack of information and awareness of his uncommon diagnosis inspired him to start a patient support group in Mexico called NETs Mexico. This patient story is also available in Spanish, found here: www.LACNETS.org/spanish-resources 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:38:00 LACNETS Webinar: The Fortune & Folly of Self-Diagnosis" with Dr. Mark Lewis NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. Dr. Lewis addresses the importance of shared decision-making and patient-physician communication. This webinar was recorded on May 6, 2022. Speaker: Mark A. Lewis, MD Medical Oncologist, Director of Gastrointestinal Oncology, Intermountain Healthcare To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 04:17 "Hush" by Giovanna Joyce Imbesi (Photography by David F. Coppedge) [Written by David F. Coppedge] "Giovanna Imbesi, founder of LACNETS (Los Angeles County Neuroendocrine Tumor Society), died on November 24, 2019 after a 14-year battle with the disease. She worked tirelessly to educate and help patients with neuroendocrine cancer and support efforts to find new treatments. Giovanna was also an accomplished musician, pianist and composer. This is her song "Hush" from her album "Short Stories" that I put to some of my photographs of fall colors in Utah and Colorado. When I presented it to her in 2016, she was very appreciative, calling it "beautiful and touching." I offer it here on YouTube as a tribute to her hard work on behalf of others suffering from this rare cancer, and as a sample of her quiet spirit and desire for peace in the midst of years of surgeries and treatments for the life-threatening disease." Play Video Play Video 05:17 Patient Story: NET Patient shares how she is thriving as a NET patient (LACNETS) NET Patient Cindy shares how she is thriving as a NET patient. November 7, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 12:03 Patient Story: NET Patient shares her inspiring story of strength & resilience (LACNETS) NET Patient Beth shares her inspiring story of strength and resilience titled "A Shared Experience." December 8, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:56 NET Patient shares how she has learned not just to survive, but also to thrive. Kelli Edwards is a 19-year NET thriver. Kelli shares how her world initially crumbled after her diagnosis and how she has since learned not just to survive, but also to thrive. Check out her recent LACNETS blog post titled "Cancer Thriver," found here: www.lacnets.org/blog/2021/9/6/cancer-thriver To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:05:15 LACNETS - "Cancer: Journey or Pilgrimage?" with Michael Eselun, BCC Chaplain (UCLA) LACNETS meeting, "Cancer: Journey or Pilgrimage?" Tuesday, December 10th, 2020 Venue: UCLA Faculty center SPEAKER: Michael Eselun, BCC Chaplain Board Certified Chaplain, Simms/Mann-UCLA Center for Integrative Oncology www.LACNETS.org Play Video Play Video 01:41:38 LACNETS Webinar: "Restringing the Beads of Our Own Story" with Michael Eselun, BCC LACNETS Webinar: "Restringing the Beads of Our Own Story" with Michael Eselun, BCC He shares an honest perspective and rich insights that resonates with cancer patients. Speaker: Michael Eselun Board Certified Chaplain, Simms/Mann UCLA Center for Integrative Oncology Learn more about LACNETS: www.LACNETS.org Audio/Video - www.TVPlive.com Patient Advocacy Patient Advocacy Play Video Play Video 35:20 5 - Q&A Panel Three NET patients advocates from around the country answer your questions about patient advocacy work. Speakers: Cindy Lovelace, Co-founder & Executive Director of The Healing NET Foundation Josh Mailman, President of NorCal CarciNET Community Dr. Mark Lewis, NET patient AND a NET oncologist of Intermountain Healthcare To learn more, visit www.LACNETS.org. Play Video Play Video 15:23 3 - “Patient Advocacy: How can YOU bring about change?” with Josh Mailman, MBA Josh Mailman, President of NorCal CarciNET Community, shares how YOU can become involved in patient advocacy work and inspire change within the NET community. 2021 Annual NET Cancer Day Virtual Symposium November 10, 2021 To learn more, visit www.LACNETS.org. Play Video Play Video 03:43 6 - Wrap Up with LACNETS Patient advocates from around the country join us for the 2021 Annual NET Cancer Day Virtual Symposium. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 17:27 2 - “Navigating a NET Cancer Journey & Living Life with Joy” with Cindy Lovelace Cindy Lovelace, Co-founder & Executive Director of The Healing NET Foundation, shares how she has learned to navigate her NET cancer journey while also living her life with joy. 2021 Annual NET Cancer Day Virtual Symposium November 10, 2021 To learn more, visit www.LACNETS.org. Play Video Play Video 35:20 4 - "NET Advocacy in the Modern Era: From A Patient-Physician Perspective" with Dr. Mark Lewis Dr. Mark Lewis, NET patient AND a NET oncologist of Intermountain Healthcare, joins us for his talk, "NET Advocacy in the Modern Era: From A Patient-Physician Perspective." perts from around the country. 2021 Annual NET Cancer Day Virtual Symposium November 10, 2021 To learn more, visit www.LACNETS.org. Play Video Play Video 42:50 Finding a NET Expert + Surgery for NETs - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: LACNETS Conference Welcome (0:00 - 5:44) Lindsey Jeu De Vine, Director of Communications, LACNETS Lisa Yen, NBC-HWC, Program Director, LACNETS "Finding a NET Expert" (5:44 - 22:25) Cindy Lovelace , Executive Director Healing NET Foundation "Surgery for NETs" (22:25 - end of video) Alexandra Gangi, MD , Surgical Oncology Cedars-Sinai Medical Center For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 13:14 17. Patient Advocacy & Support (Josh Mailman) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Josh Mailman, MBA, Advocate, President NorCal CarciNet For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:38:00 LACNETS Webinar: The Fortune & Folly of Self-Diagnosis" with Dr. Mark Lewis NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. Dr. Lewis addresses the importance of shared decision-making and patient-physician communication. This webinar was recorded on May 6, 2022. Speaker: Mark A. Lewis, MD Medical Oncologist, Director of Gastrointestinal Oncology, Intermountain Healthcare To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 08:05 1 - Welcome Statements: 2021 Annual NET Cancer Day Virtual Symposium Patient advocates from around the country join us for the 2021 Annual NET Cancer Day Virtual Symposium. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 15:11 15. Being an Engaged Patient (Josh Mailman) - 2022 LACNETS Conference NET patient advocate Josh Mailman discusses the importance of being an engaged patient. Speaker: Josh Mailman, MBA President, NorCal CarciNET Community 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Patient/Caregiver Stories Patient/Caregiver Stories Play Video Play Video 32:58 Patient Panel with NET Patients Beth, Burt, Denny & Mary • 2023 NET Cancer Day @NCFCancer Patient Panel with NET Patients Beth, Burt, Denny & Mary • 2023 NET Cancer Day Symposium • Santa Monica, CA • @LACNETS For more information, visit LACNETS.org Play Video Play Video 09:44 "Practical Tips For Patients Preparing For Chemotherapy" • Lisa Yen, NP, NBC-HWC NET caregiver Lisa Yen’s “show and tell” of tips, tricks, and items she and her husband found to be helpful when dealing with chemotherapy. Read LACNETS blogpost Practical Tips For Patients Preparing For Chemotherapy: https://www.lacnets.org/post/practical-tips-for-patients-preparing-for-chemotherapy. For more information on LACNETS, visit www.LACNETS.org. Play Video Play Video 04:50 13) "A NET Journey" - Ilka & Shane Share Their Story • 2024 Neuroendocrine Tumor Patient Conference 13) A NET Journey - Ilka & Shane • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 08:13 "A NET Journey" - Karla Shares her Story • 2024 Neuroendocrine Tumor Patient Conference 4) A NET Journey - Karla • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 03:40 NET Patient Dorinda Shares her Journey - LACNETS Hear Dorinda's story Play Video Play Video 05:52 Gwendolyn shares her NET journey • NET Patient • LACNETS Gwendolyn, a NET patient, shares her NET journey. Play Video Play Video 06:45 Dusty shares her NET journey • NET Patient • LACNETS Dusty, a NET Patient shares her NET Journey. Play Video Play Video 05:47 Bob, NET Patient Bob, NET Patient Play Video Play Video 06:59 Don & Beth Share Their NET Journey • 2023 LACNETS Patient Conference Don & Beth share their inspiring NET journey. For more information, visit LACNETS.org. Play Video Play Video 05:02 Kimberly Shares About Her NET Journey • 2023 LACNETS Patient Education Conference Kimberly shares her inspiring NET journey as part of the 2023 LACNETS Patient Education Conference. Play Video Play Video 08:41 LACNETS • NET Patient Mary Donlevy's Story Play Video Play Video 05:49 Patient Story: Zollinger-Ellison Syndrome and Gastrinoma Patient story of someone living with Zollinger-Ellison syndrome and a functioning gastrinoma of the pancreas Play Video Play Video 07:53 Patient Story: How to Prepare for Surgery NET patient Julie’s “show and tell” of tips, tricks, and specific items she found useful during her hospital stay and recovery at home Click here for a list of the items Julie mentioned in this video: bit.ly/3vEenQf Read our blog post, 'Practical Tips for Patients Preparing for Surgery" here: bit.ly/3Ac0xHF For more information on LACNETS, visit www.LACNETS.org. Play Video Play Video 06:38 04. Patient Story: Treatment Decisions & Navigating Insurance - 2022 LACNETS NET Patient Conference Diagnosed in 2021 with NETs in the small bowel, NET Patient Julie shares her path to treatment in hopes of providing guidance to newly-diagnosed patients. 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 07:12 12. Patient Story: From Diagnosis to Patient Advocacy - 2022 LACNETS NET Patient Conference Diagnosed with neuroendocrine cancer (NET) in 2021, NET patient Michel shares how the lack of information and awareness of his uncommon diagnosis inspired him to start a patient support group in Mexico called NETs Mexico. This patient story is also available in Spanish, found here: www.LACNETS.org/spanish-resources 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:38:00 LACNETS Webinar: The Fortune & Folly of Self-Diagnosis" with Dr. Mark Lewis NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. Dr. Lewis addresses the importance of shared decision-making and patient-physician communication. This webinar was recorded on May 6, 2022. Speaker: Mark A. Lewis, MD Medical Oncologist, Director of Gastrointestinal Oncology, Intermountain Healthcare To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 06:41 NET Patient Story: Re-treatment with PRRT (salvage PRRT) A patient living with neuroendocrine cancer shares his experience undergoing multiple rounds of PRRT treatments. This video was recorded in April 2022. Additional PRRT resources can be found here: https://www.lacnets.org/prrt To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:20 Patient Story - Living with High Grade Neuroendocrine Cancer A patient living and thriving with high grade neuroendocrine cancer shares her inspiring story. This video was recorded in March 2022. High grade NETs resources can be found here: lacnets.org/high-grade-nets-resources To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 09:47 Caregiver Story - Pheo/Para Aimee Powell, a caregiver and advocate for family members diagnosed with pheochromocytoma and paraganglioma shares what led her to a life of patient advocacy and assisting patients with these rare tumors. Aimee is the founder of The Pheo Para Project – www.pheoparaproject.org. To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:56 NET Patient shares how she has learned not just to survive, but also to thrive. Kelli Edwards is a 19-year NET thriver. Kelli shares how her world initially crumbled after her diagnosis and how she has since learned not just to survive, but also to thrive. Check out her recent LACNETS blog post titled "Cancer Thriver," found here: www.lacnets.org/blog/2021/9/6/cancer-thriver To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 05:40 16. Caregiver Story (Federico and Gilda) - 2021 LACNETS Virtual Conference NET caregiver Gilda shares her story about the importance of NET patient advocacy and support. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS This video is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 04:40 03. Patient Story (Federico) - 2021 LACNETS Virtual Conference NET Patient Federico and his wife share their journey with NET. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS This video is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 06:00 11. Patient Story about Symptom Management (Val) - 2021 LACNETS Virtual Conference NET Patient Val shares her experience with symptom management and NETs. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 07:35 Patient Story: NET Patient shares his experience with PRRT NET Patient Denny shares his experience with PRRT. April 13th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 07:10 Patient Story: NET Patient shares her experience with Alpha PRRT NET Patient DeAnne shares her experience with Alpha PRRT. March 16th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 05:58 Patient Story: NET Patient shares her experience with the LACNETS health coaching program NET Patient Vivian shares her experience with the LACNETS health coaching program. August 28, 2020 To learn more about the LACNETS Health Coaching Program, visit www.LACNETS.org/healthcoaching. Play Video Play Video 05:32 Patient Story: NET patient shares about his journey and decision-making (LACNETS) NET patient Eric shares his NET journey including surgery and shared decision-making with his NET expert following surgery. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 04:47 Patient Story: NET patient shares about "scan-xiety"(LACNETS) NET patient Mary shares about "scan-xiety," the common anxiety patients sometimes have when undergoing scans. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 05:54 Patient & Caregiver Story: NET patient & caregiver share about their experience with PRRT (LACNETS) NET patient Shaunie and her daughter/advocate Heather share about their experience with PRRT. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 04:26 Patient Story: NET Patient shares about symptom management (LACNETS) NET Patient Brent shares about symptom management. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Load More < Back to Topics Next Topic >

Liver Directed Therapy < Back to Topics Play Video Play Video 31:32 Episode 38: "NEN Treatments: Focus on Liver-Directed Therapies (Part 1) In this 2-part series, Dr. Osman Ahmed from University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this first episode, he outlines the types of liver-directed therapies and elaborates on ablative techniques including the newest technique, histotripsy. Listen to a frank discussion of how histotripsy works, when it might be used, and what its current limitations are. MEET DR. OSMAN AHMED Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage. In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology. Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology. TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY INCLUDING HISTOTRIPSY: 1. What is liver-directed therapy? How does it work? Is this considered “surgery”? What is a surgery and what is a “procedure?” 2. What are the types of liver-directed therapies used for neuroendocrine cancer? 3. Which neuroendocrine cancers are they used for and when are they used? How do you decide who is a good candidate and if it will be effective? 4. When are liver-directed therapies NOT used? Can someone who has had a Whipple undergo liver-directed therapy? 5. What is the ablation zone? What is a heat sink effect? 6. What is histotripsy? How does it work? 7. When is histotripsy used (tumor grade, type of tumor - PNET/lung NET, size, number of tumor, location)? Can they be used for liver tumors even if there are tumors outside the liver? 8. What are the limitations to histotripsy? 9. What happens to the liver tissue after ablation? What are the results or success rates of patients being treated? Can histotripsy “cure” NET? 10. How do you decide between the various types of liver-directed therapies? For more information, transcript and resources, visit https://www.lacnets.org/podcast/38. Play Video Play Video 01:35:06 "Evolving Management of NET Liver Metastases" Dr. Gagandeep Singh • 2024 #LACNETS Educational Event Join us to hear renowned liver and pancreas surgeon Dr. Gagandeep “Gaugs” Singh discuss the evolving algorithms in the management of NET liver metastases. Dr. Singh, Chief of Surgical Oncology at City of Hope® Cancer Center in Phoenix, asks the question of whether it is prudent to be aggressive surgically or if it is all about timing and strategy. For more information, visit LACNETS.org. Play Video Play Video 21:33 "Understanding Liver-Directed Therapy" with Dr. Soulen • 2024 #LACNETS Patient Conference 8) Understanding Liver-Directed Therapy • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 01:19:50 "Minimally Invasive Treatments for Neuroendocrine Liver Metastases" • Dr. Yilun Koethe • Dec 9, 2023 "Minimally Invasive Treatments for Neuroendocrine Liver Metastases" with Dr. Yilun Koethe, Interventional Radiologist, TRG Imaging. Learn more about minimally invasive liver directed therapies targeting liver metastases with interventional radiologist Dr. Koethe. She discusses ablations including the recently approved histotripsy and embolizations including bland, chemo and radioembolization. ~ Visit LACNETS.org for more information. Play Video Play Video 17:02 The Latest in Liver-Directed Therapy • Dr. Osmanuddin Ahmed • 2023 LACNETS Patient Conference Watch "The Latest in Liver-Directed Therapy" with Dr. Ahmed. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 15:21 09. The Latest in Liver Directed Therapy + Histotripsy (Dr. Osman Ahmed) - 2022 LACNETS Conference International radiologist Dr. Osman "Os" Ahmed addresses the latest in liver-directed therapy and histotripsy for neuroendocrine cancer. Speaker: Osman Ahmed, MD International Radiologist, University of Chicago 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:05:05 LACNETS - "The Role of Interventional Radiology in NET" Dr. Steven Raman "The Role of Interventional Radiology in NET" Speaker: Steven Raman, M.D. Diagnostic and Interventional Radiology Specialist UCLA Medical Center Play Video Play Video 19:30 Interventional Radiology: Gabriel Lipshutz, MD - 2019 LA NET Conf Interventional Radiology: Gabriel Lipshutz, MD H. Gabriel Lipshutz, MD Interventional Radiology, Cedars-Sinai Medical Center 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 01:20:02 Imaging & Role of IR (Liver-Directed Therapy) + PRRT - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: "Patient Story" (0:00 - 6:06) Mary, NET Patient "Imaging & Role of IR (Liver-Directed Therapy)" (6:06 - 43:31) Michael C. Soulen, MD , Radiology Penn Medicine "Patient & Caregiver Story" (43:31 - 50:52) Shaunie, NET Patient; Heather, NET Caregiver "PRRT" (50:52 - end of video) Erik S. Mittra, MD, PhD, Diagnostic Radiology, Nuclear Medicine Oregon Health & Science University For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 17:16 09. Liver-directed Therapy (Dr. Nutting) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Charles Nutting, DO Interventional Radiologist Endovascular Consultants of Colorado For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. < Back to Topics Next Topic >

Join us in person for a rare opportunity to gather at the National Cancer Institute (NCI) in Bethesda, Maryland, for our first joint patient educational event between the NCI, LACNETS & the Pheo Para Alliance (PPA).  On Saturday, September 9th, renowned NET experts from across North America will cover an array of topics from surgery, PRRT, systemic treatments and clinical trials.  Registration Closed Join us in person for a rare opportunity to gather at the National Cancer Institute (NCI) in Bethesda, Maryland, for our first joint patient educational event between the NCI, LACNETS & the Pheo Para Alliance (PPA) . On Saturday, September 9th, renowned NET experts from across North America will cover an array of topics from surgery, PRRT, systemic treatments and clinical trials. LACNETS is honored to partner with the NCI, the leader in cancer research, and the PPA, a non-profit organization dedicated to empowering those with pheochromocytoma or paraganglioma through advocacy, education, research and support. A special thank you to our partner The Carcinoid Cancer Foundation for their support in awareness and outreach efforts. All NET Patients and Caregivers are welcome. This conference will not be live-streamed or recorded. Breakfast and lunch provided. Networking opportunities with other patients, caregivers, and NET experts. *Please note there is a NANETS Regional NET Education Event for the medical community on September 8th, also hosted at the NCI. Tell your local healthcare professionals about this NANETS regional event to help raise awareness of and knowledge about NET. LACNETS Track Click Here for LACNETS Track Speaker Bios >>> PPA Track Click Here for PPA Track Speaker Bios >>> ACCOMMODATIONS Recommended hotels: The Bethesdan Tapestry Collection by Hilton 8120 Wisconsin Avenue Bethesda, MD 20814 Hyatt Regency Bethesda One Bethesda Metro Center (7400 Wisconsin Ave) Bethesda, MD 20814 TRANSPORTATION Airport Click here for more information about the nearest airports >>> GOVT ID/Security Check Required For All Participants Valid government-issued photo identification is accepted to receive a visitor pass. Acceptable identification include: REAL ID Driver’s License or State Identification Card Passport or Passport Card HSPD-12 PIV or CAC Card Permanent Resident Card Federally recognized, tribal-issued photo ID Canadian provincial driver's license, or Indian and Northern Affairs Canada Cards. Any visitor 16 years of age and older is required to provide identification to receive a visitor ID. Getting to the Natcher Conference Center Note: The Gateway Center Visitor Entrance is only open from 6:30 - 10 AM. Shuttles from Hotels to the Gateway Center Visitor Entrance, Building 66: Natcher Conference Center (Building 45) Shuttles from Hotels to Gateway Center Visitor Entrance, Building 66. (Please note these are outside Shuttles, not Hotel Courtesy Shuttles). Shuttles from 7 - 8 AM Shuttles will run from the Hyatt Regency, The Bethesdan Hotel by Hilton and the Gateway Center Visitor Entrance, Building 66, 9000 Rockville Pike, Bethesda, MD 20894 beginning at 7 AM. Drop off at Gateway Center for security clearance. Gateway Center to Natcher Conference Center (Building 45) Walk to Natcher Conference Center Please exit the Gateway Center via stairs or elevator on the second floor and follow the paved walkway to building 45 (Natcher Conference Center). You will approach the back of the building. The doors will be open. Take the stairs or elevators one floor down. This is the Natcher Conference Center entrance for pedestrians walking from the Gateway Center. Rideshare to the NIH Gateway Center + Walk to the Natcher Conference Center (Building 45) Take a taxi, Uber or Lyft to the NIH Gateway Center, 9000 Rockville Pike, Bethesda, MD 20894 Drop off at the Gateway Center for security clearance Gateway Center to Natcher Conference Center (Building 45) Walk over to Natcher Conference Center Please exit the Gateway Center via stairs or elevator on the second floor and follow the paved walkway to building 45 (Natcher Conference Center). You will approach the back of the building. The doors will be open. Take the stairs or elevators one floor down. This is the Natcher Conference Center entrance for pedestrians walking from the Gateway Center. Take the Metro's Red Line to the Medical Center Station + Walk to the Gateway Center + Walk to the Natcher Conference Center (Building 45) Take the Metro's Red Line to the Medical Center Station Visit the Metro website for more information about the Medical Center Station hours, timetables and 'Plan A Trip' tool. The Medical Center Station is located at 8810 Rockville Pike, Bethesda, MD 20814. Walk to the NIH Gateway Center at 9000 Rockville Pike, Bethesda, MD 20894 Head south on Rockville Pike toward South Dr (171 ft) Gateway Center to Natcher Conference Center (Building 45) Please exit the Gateway Center via stairs or elevator on the second floor and follow the paved walkway to building 45 (Natcher Conference Center). You will approach the back of the building. The doors will be open. Take the stairs or elevators one floor down. This is the Natcher Conference Center entrance for pedestrians walking from the Gateway Center. Drive your car to the NIH Commercial Vehicle Inspection Facility (CVIF) + Park in the lot next to the Natcher Conference Center (Building 45) Download + Print the Visitor Entry Processing Information Form >> Clear Security at the NIH CVIF The NIH CVIF is located at: 9000 Rockville Pike Bethesda, MD 20892. You must fill out the Visitor Entry Processing Information Form. Please print this form before arriving at the security gate for faster processing. Drive from CVIF to the Natcher Conference Center (Building 45) After exiting CVIF, take a left at the two-way traffic sign. Take a right on Wilson Drive. Take a left on Center Drive. You will pass several buildings. Please note that the building numbers are not in numerical order. Park in the lot next to the Natcher Conference Center. *Note: Parking garages are closed on Saturday. Only surface/outside lots and parking spots are available near the Natcher building. Look for this sign for the CVIF Entrance Take a left at this two-way traffic sign The Natcher Conference Center is a cement and glass building. #45 is visible in the area circled green below. Park in the surface lots circled here in red next to Natcher, Medlars St, and Center Dr. All parking restrictions are lifted and won't be enforced, except for handicapped parking spaces. LEAVING THE CONFERENCE CENTER 2:30 PM - 4:30 PM Two shuttles will run between: Natcher Conference Center Hyatt Regency The Bethesdan Hotel by Hilton Up The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.

Pheo/Para Resources EDUCATIONAL VIDEOS "Update on Pheochromocytoma and Paraganglioma: Focusing on Advanced/Metastatic Disease" with Jaydira Del Rivero, MD Have you wondered if NETs might be hereditary? What do you know about pheochromocytoma and paraganglioma (pheo/para)? NET expert Dr. Jaydira Del Rivero gives a full update on these rare and often misdiagnosed conditions. *This presentation was recorded on February 17, 2022. Dr. Del Rivero’s presentation slides can be downloaded here. This presentation is available in Spanish, found here . "Focus on Pheochromocytoma/Paraganglioma" Join LACNETS for a unique webinar with a live presentation of three pheochromocytoma and paraganglioma (PPGL) cases and an engaging panel discussion with experts Dr. Jaydira Del Rivero, Dr. Erik Mittra, and Dr. Karel Pacak. Click here for more information>> Aimee Powell Shares Her NET Journey Aimee Powell, a caregiver and advocate for family members diagnosed with pheochromocytoma and paraganglioma shares what led her to a life of patient advocacy and assisting patients with these rare tumors. Aimee is the founder of The Pheo Para Project – www.pheoparaproject.org . PODCAST The LACNETS Podcast: "Pheochromocytoma & Paraganglioma" with Jaydira Del Rivero, MD In honor of Pheo Para Awareness Week, NET endocrinologist and medical oncologist Dr. Jaydira Del Rivero of the National Cancer Institute answers ten common questions about pheochromocytoma and paraganglioma (PPGL). Dr. Del Rivero defines PPGL and describes the unique symptoms, genetic testing, and treatment options for PPGL. Listen here READING MATERIALS NANETS Guidelines for Surveillance and Management of Metastatic and/or Unresectable Pheochromocytoma and Paraganglioma Download here BLOG "The Notorious PCC" - by Aimee Powell "El Notorio Feo/Para" (Spanish) CLINICAL TRIALS Pheo Para Clinical Trials PHEO/PARA ORGANIZATIONS Pheo Para Alliance Pheo Para Project VHL Alliance AMEND PHEiPAS RESOURCES FROM LANTHEUS Download the Azedra patient brochure Download more information on the AZEDRA Service Connection® Patient Services For more information, please visit: Azedra Patient Website Lantheus Website NOTE: Azedra will be discontinued in early 2024. Find an AZEDRA treatment site near you AZEDRA Site Locator