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Neuroendocrine cancer (including neuroendocrine tumors/NET or neuroendocrine carcinoma/NEC) can feel isolating. Because the disease is uncommon and often misunderstood, many patients and caregivers spend months or years searching for clear information, experienced providers, and people who truly understand what they are facing. That is why in-person education and connection matters. The 2026 NET Cancer Day Symposium will bring the neuroendocrine cancer community together in Las Vegas, Nevada, on Sunday, November 8th, to focus on education, connection, and awareness. This is an opportunity for patients, caregivers, and advocates to interact with healthcare professionals in an intimate forum. You’ll be provided with the rare opportunity to hear directly from clinicians and specialists who understand neuroendocrine cancer and can help patients and caregivers build their knowledge, better understand the disease, learn about current therapies, and gain insight into questions they may want to discuss with their own care teams. This can help you feel more prepared and empowered to tackle your care and navigate complex decisions. The goal is not to replace conversations with your medical team. Instead, educational events can help you become a well-informed partner in those conversations. Education does not only come from the stage. It also comes from conversations in the room. The symposium is intended to create space for connection among patients, caregivers, clinicians, advocates, and supporters. Living with neuroendocrine cancer can bring uncertainty, stress, and emotional challenges. In-person gatherings can help patients and caregivers feel less alone and more connected to a community that understands the realities of neuroendocrine cancer. Hearing from others who are living with neuroendocrine cancer, caring for a loved one, or working to advance the field can offer encouragement, perspective, and a renewed sense of solidarity. “I have been part of the NET community for more than a decade, and some of my most meaningful experiences have come from sitting with the NCF team, exchanging ideas and shaping topics for meetings throughout the years—not only for NET Cancer Day. We do this because we genuinely love the work and care deeply about creating valuable experiences for the NET community. It is especially meaningful to have such an active role in planning and hosting the 2026 NET Cancer Day Symposium, and I am truly looking forward to welcoming everyone for a productive, engaging, and exciting meeting.” - Taymeyah Al-Toubah, Interim NCF Program Director RAISE AWARENESS TOGETHER NET Cancer Day is a global opportunity to increase awareness of neuroendocrine cancer. The 2026 NET Cancer Day Symposium will be part of that broader effort by bringing people together to learn, connect, and help expand understanding of this complex and often misdiagnosed disease. When patients, caregivers, advocates, clinicians, and supporters gather in person, they help enhance neuroendocrine cancer awareness within your community. JOIN US IN LAS VEGAS The 2026 NET Cancer Day Symposium will take place in Las Vegas, Nevada, from 8:30 AM to 3:00 PM, on Sunday, November 8th, at the JW Marriott Las Vegas Resort & Spa, 221 N Rampart Blvd Las Vegas, NV 89145. Whether you are newly diagnosed, have been living with neuroendocrine cancer for years, are caring for a loved one, or want to better understand this disease, the symposium is an opportunity to learn, connect, and take the next step with support. Thanks to the generosity of sponsors, we invite you to join us at no cost. Breakfast, lunch and beverages will be provided. Register for this in-person event: NCF.net/events/ncd2026 THANKS TO OUR SPONSORS

Taymeyah Al-Toubah, MPH, CCRP The Neuroendocrine Cancer Foundation ("NCF") is grateful to welcome Taymeyah Al-Toubah, MPH, CCRP, in a special support role as the Interim Program Director during the remainder of 2026. Taymeyah will support NCF’s programs and educational efforts from July 1 through December 31, 2026, helping ensure continuity for the patients, caregivers, clinicians, and community members who rely on NCF for trusted education, resources, and connection. This temporary support comes as Lisa Yen, NP, NBC-HWC, NCF’s Director of Programs & Outreach, takes time following the passing of her beloved husband, Tom Bajoras. Taymeyah brings more than a decade of experience in academic medicine, clinical research, oncology, and neuroendocrine tumor research. She holds dual bachelor’s degrees in Biomedical Sciences and Psychology and a Master of Public Health in Epidemiology. Her interest in neuroendocrine tumors began during her MPH thesis, which became one of her first NET publications. From 2018 to 2023, Taymeyah served as the primary neuroendocrine tumor (NET) coordinator at Moffitt Cancer Center, managing clinical trials, leading the GI team, and supporting retrospective and non-interventional research. She later served as Senior Project Manager of the NET program, overseeing protocol development, database creation, manuscript writing, and the curation of a master database of more than 10,000 NET patients. Taymeyah has published more than 45 manuscripts and has presented at both Europeon Neuroendocrine Tumor Society (ENETS) and the North American Neuroendocrine Tumor Soceity (NANETS). She serves on the Board of Directors of NANETS and co-founder and medical advisory committee of FLaNET Carcinoid Community, and she continues to mentor students pursuing neuroendocrine tumor research. In 2025, she began medical school in Italy, continuing her path toward becoming a physician-scientist dedicated to advancing care for neuroendocrine cancer patients. We are thankful to Taymeyah for stepping in during this meaningful time and grateful to our staff, Board, volunteers, medical advisors, and community partners for continuing to support NCF’s mission. As always, NCF remains committed to providing trusted education, support, and resources for people impacted by neuroendocrine cancer. If you have any questions, email the NCF team at info@NCF.net. THANKS TO OUR SPONSORS

Team Craig chose the Neuroendocrine Cancer Foundation (NCF) to support its work on behalf of patients and families affected by neuroendocrine cancer. Team Craig is named in honor of Craig Adams, who lost his battle with a form of neuroendocrine cancer in 2015. His sons, Ben and John Adams, promised to honor his legacy and give back to the community that helped give their family eight extra years with him. What began as a tribute to their father has grown into a powerful tradition: each year, a lacrosse team made up of friends and teammates from across the country competes in the Vail Lacrosse Shootout, united by Craig’s legacy and a shared passion for the game. Team Craig has quickly become one of the top competitors in the tournament, finishing third in 2024 and winning the tournament championship in 2025. In 2026, the team returned to compete again with a renewed mission to raise awareness and funds for families affected by neuroendocrine cancer. This year, Team Craig took that mission one step further by dedicating its efforts to supporting NCF’s work to expand awareness, education, and patient resources for those impacted by this complex and uncommon disease. The effort included a casual community gathering at Ratio Beerworks - OVERLAND in Denver, where supporters came together for live music, refreshments, conversation, and community in support of NCF. Neuroendocrine cancer can be difficult to diagnose and treat, and many patients experience years of misdiagnosis or undiagnosed symptoms. NCF works to change that by providing education and resources for patients and caregivers, increasing awareness and understanding of neuroendocrine cancers, connecting patients to experts and information about treatment options and clinical trials, and supporting a community for people navigating diagnosis and care. As Heather Davis, NCF’s Director of Community Engagement, reflected, navigating a difficult cancer can feel a lot like the unpredictable path of a loose ground ball in lacrosse. You never know exactly which way it will bounce, and the next challenge can come quickly. For many people living with neuroendocrine cancer, that uncertainty is part of daily life. There is often a constant need to adapt, make decisions, overcome obstacles, and prepare for what comes next. In lacrosse, one of the most important skills is cradling the ball: keeping it secure in the pocket of the stick while running, dodging defenders, preparing to pass, or taking a shot. That image feels especially meaningful for the neuroendocrine cancer community. Living with an uncommon cancer requires strategy, skill, focus, and agility. It requires a team that can help protect, guide, and support patients and families as they move through each stage of care. That is why NCF is so grateful to Team Craig, the Adams family, Chase Konkel, and everyone who helped bring this effort to life. Their generosity and commitment are helping NCF “cradle” the neuroendocrine cancer community by supporting those living with this uncommon cancer and helping connect more people to the resources and expertise they need. Although Team Craig did not take home the championship this year, their presence on the field represented something far greater than a final score. They played with purpose, honoring Craig’s memory and continuing a legacy rooted in teamwork, resilience, and care for others. NCF believes it takes a strong team to face cancer and to live well despite it. Team Craig is helping make that possible so that no one has to face neuroendocrine cancer alone. A special shoutout to Bodango for bringing the music and positive energy to the event and helping make the gathering even more memorable. We extend our heartfelt thanks to Ben and John Adams, Chase Konkel, the Adams family, donors, supporters, and Team Craig Lacrosse. Your commitment to this community is deeply meaningful, and your support will help NCF continue providing education, connection, and hope to patients and families affected by neuroendocrine cancer.

On Saturday, May 16, approximately 110 people, including neuroendocrine cancer patients, caregivers, clinicians, scientists, advocates, and industry partners, gathered in Atlanta, Georgia, for the Neuroendocrine Cancer Foundation Patient Education Event. Designed specifically for individuals living with neuroendocrine cancer (or NET) and their loved ones, this full-day program brought together leading regional experts from Emory University, the University of Alabama at Birmingham (UAB), and Vanderbilt University Medical Center to provide practical, up-to-date education on the diagnosis and management of neuroendocrine cancer. Attendees traveled from across the Southeast and beyond to learn more about their disease, connect with others who understand the NET journey, and gain hope through education and community. For many, this was their very first NET patient education event. Notably, none of the attendees had previously participated in clinical trials or research, underscoring the importance of continuing efforts to improve patient education and awareness around emerging treatment opportunities. Participants remained highly engaged throughout the day, asking thoughtful questions and sharing meaningful conversations with both experts and fellow attendees. Prior to the event, Dr. Daniel Halperin shared his thoughts on the value of attending in-person educational programs during this rapidly evolving time in neuroendocrine cancer care: The day opened with an inspiring patient story from Jay, who shared his experience living with neuroendocrine cancer and his perspective on learning to live “symbiotically” with the disease. He spoke candidly about refusing to let NET define or limit his life and about maintaining emotional steadiness even during moments of tumor progression or treatment changes. His honesty, humor, and optimism resonated deeply with attendees and helped set the tone for a patient-centered day grounded in resilience and hope. Eight outstanding speakers covered a broad range of clinical and practical topics, including surgery, liver-directed therapy, systemic treatments, imaging, PRRT, and clinical trials. Attendees also learned about emerging research exploring GLP-1 agents and neuroendocrine tumors from a leading scientist in the field. Event Recording To help attendees continue learning and revisit the information shared during the program, watch the full event recording below. To download speaker slides, click the link beneath each presentation title. Two Q&A panel discussions gave attendees the opportunity to ask questions spanning a wide range of topics, from preparing for a first NET appointment and navigating treatment decisions to understanding clinical trials and the growing role of artificial intelligence in research and clinical care. Welcome & Introductions A Patient Journey Multidisciplinary Approach to Surgery for NET Liver-Directed Therapy: Understanding Minimally Invasive Options to Treat Liver Tumors Understanding Your Scans and PRRT: How Imaging Guides Treatment Preparing for PRRT: What Patients Need to Know Systemic Therapy for Neuroendocrine Cancer: What Patients Need to Know Q&A Session + Expert Panel #1 How Do GLP-1 Agents Factor Into Neuroendocrine Tumor Care Strategies? What It Means To Be Part of a Clinical Trial Clinical Trials: What's on the Horizon? Q&A Session + Expert Panel #2 Whether newly diagnosed or living with NET for more than 20 years, participants consistently shared that the information was practical, understandable, and highly relevant to their daily lives. Beyond the educational sessions, attendees valued the opportunity to connect personally with speakers, patient advocates, and industry supporters. Many especially enjoyed learning fun and humanizing facts about the clinicians’ hobbies and interests outside of medicine. Participants were also treated to a moving reading of healing poetry by Dr. Saima Muzahir, which brought an especially meaningful and reflective moment to the day. By the close of the program, attendees left with new knowledge, new connections, and renewed hope. The event highlighted not only the tremendous progress being made in neuroendocrine cancer research and treatment, but also the collective commitment across the NET community to help people live longer and better with this uncommon disease. The post-event survey, completed by approximately 15% of the attendees, highlighted the success of the conference: Conference Success Highlights 100% of respondents said the event was worthwhile 100% would recommend the conference to others 100% said they visited Supporter's Exhibit Tables 100% of the respondents said they have an increased knowledge of various procedures and/or treatments specific to my diagnosis. Attendees rated the event an average of 4.75 out of 5 overall More than 91% reported a better understanding of neuroendocrine cancer Participants rated their increased awareness of NCF resources at an average of 4.7 out of 5 Participants described the event as: “Terrific” “Very informative” “Helpful in understanding treatment options.” “A wonderful opportunity to connect with experts and other patients” Following the Neuroendocrine Cancer Foundation’s Patient Education Conference in Atlanta, Drs. Seth Concors and Udhay Grewal of Emory University discussed the value of multidisciplinary care for people living with neuroendocrine cancer. They highlighted how bringing multiple specialists together in a coordinated team approach helps patients better understand their options, streamline care, and develop comprehensive treatment plans closer to home. Special thanks to Dr. Udhayvir Grewal for his collaboration and partnership with the Neuroendocrine Cancer Foundation in making this event possible. To learn more about upcoming Neuroendocrine Cancer Foundation in-person and virtual programs, visit the NCF Upcoming Events & Meetings page. THANKS TO OUR SPONSORS

Recapping the SNMMI Neuroendocrine Cancer Patient Education Event On May 31st, the 2026 Society of Nuclear Medicine and Molecular Imaging (SNMMI) Neuroendocrine Cancer Patient Education Day brought the NET community to the Los Angeles Convention Center, co-organized by the Neuroendocrine Cancer Foundation (NCF) and NorCal CarciNET's Josh Mailman alongside the SNMMI Annual Conference. Offered completely free and in a hybrid format, the event opened doors for patients and families, whether they attended in person or tuned in from home. From morning sessions on imaging and clinical trials to an afternoon deep dive into the frontiers of theranostics, the day was anchored by a throughline that never let up: the patient is at the center of all of it. This video is a recap of the Patient Education Day at SNMMI. Starting with the big picture: nuclear medicine and clinical trials The morning opened with a grounding overview of nuclear medicine and molecular imaging from Martin Tornai, PhD, of the National Institutes of Health's National Institute of Biomedical Imaging and Bioengineering. For many patients, terms like DOTATATE and PRRT carry enormous weight, and this session gave attendees a clearer foundation for understanding the tools being used in their care. George Fisher, MD, PhD, of Stanford Cancer Center, then walked through one of the most practical topics a NET patient can navigate: how to understand and evaluate clinical trials. From how trials are structured to what questions to ask your care team, this session was designed to help patients feel more empowered, not overwhelmed, when considering their options. 10:10 AM Welcome and Announcements 10:10 - 11:00 AM What is Nuclear Medicine and Molecular Imaging?/Radiation Safety Martin Tornai, PhD, National Institute of Biomedical Imaging and Bioengineering, National Institutes of Health 11:00 - 11:45 AM How to Understand and Evaluate Clinical Trials George Fisher, MD, PhD, Stanford Cancer Center, Palo Alto, CA Recording of the Morning Session Over Lunch: Innovations in Imaging For those attending in person, lunch was more than a meal. Simon Cherry, PhD, of UC Davis, offered an exclusive mid-day talk, "Seeing is Believing," on the latest imaging innovations and how advances in technology are translating into better, more precise patient care. The Afternoon: All of This, So We Can Live The afternoon opened in the most meaningful way possible: with a patient story. NCF community member Brenna Bash took the stage and set the tone for everything that followed. Her story was a reminder that behind every data point, every clinical breakthrough, and every hour spent in a treatment chair is a person who wants to be present for their life. Not just to survive, but to truly live. That spirit carried through every session that followed. 1:20 PM Neuroendocrine Tumor Overview George Fisher, MD, PhD · Stanford University 1:40 PM Meet the Author poster presentations Lisa Bodei, MD, PhD (MSK) & Frank Lin, MD (NCI) 2:00 PM Optimizing your health for your NET journey Eric Liu, MD · Healing NET Foundation 2:40 PM The role of interventional radiology Gabriel Fine, MD · City of Hope Cancer Center 3:00 to 3:50 PM Theranostics: where we are now and where we're going Lisa Bodei, MD, PhD · Erik Mittra, MD, PhD · Richard Baum, MD, PhD Dr. Eric Liu's session on optimizing health for the NET journey brought this theme into sharpest focus, addressing not just treatment but the whole person navigating it. And the theranostics sessions with Drs. Bodei, Mittra, and Baum made clear how rapidly the field is expanding, with options growing for patients whose tumors express somatostatin receptors and, crucially, for those in G3 NET and beyond who have historically had fewer paths forward. Professor Richard Baum brought the afternoon to a close with words that felt like the perfect summation of everything the day had stood for. Recording of the Afternoon Session "Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less." - Marie Curie, as shared by Prof. Richard Baum The Experts Who Made It Possible Richard Baum, MD Curanosticum Wiesbaden, Germany Lisa Bodei, MD, PhD Memorial Sloan Kettering, NY Gabriel Fine, MD City of Hope, Duarte, CA George Fisher, MD, PhD Stanford Cancer Center Eric Liu, MD Healing NET Foundation Erik Mittra, MD, PhD Oregon Health & Science University More Than Education: A Community What makes events like this special isn't just the science. It's the moment a patient realizes they're not navigating this alone, that there's a room full of people who understand the fear, the hope, and the determination it takes to live with a neuroendocrine cancer diagnosis. The in-person networking reception that closed the day gave attendees space to connect, share, and simply be with others who truly get it. The NCF Team, including Lisa Yen, Heather Davis & Mary Donlevy Thanks to Josh Mailman, NorCal CarciNET, the Society of Nuclear Medicine and Molecular Imaging, and to every speaker who gave their expertise and their time. Thank you to Brenna for her courage in sharing her story. We do all of this because patients deserve to live, and to live well. Stay connected with NCF To watch more educational webinars on a variety of topics, visit our YouTube Channel and explore more resources at NCF.net. Our support line, virtual support groups, and NETCONNECT peer-to-peer program are here for you year-round. THANKS TO NCF SPONSORS

The 2023 NET Cancer Day Symposium featured a piano concert by Tom Bajoras, showcasing original works composed during his journey with neuroendocrine cancer. The Neuroendocrine Cancer Foundation ("NCF") is deeply saddened by the passing of Tom Bajoras, a beloved member of our community, a neuroendocrine cancer patient, musician, composer, advocate, and friend whose music and spirit touched so many. Tom passed away peacefully after living with neuroendocrine cancer for more than eleven years. In a message to the NCF community, his wife, Lisa Yen, NP, NBC-HWC, shared that Tom was “the kindest, gentlest soul — funny, generous, and endlessly creative,” someone who “found beauty in the ordinary and gave it back to the world.” For many in the neuroendocrine cancer community, Tom was known not only as Lisa’s husband, but as a gifted artist who brought comfort, reflection, and beauty to others through music. Tom had a long career in music production and recording, and after his diagnosis in 2015, he continued to create music with depth, meaning, and generosity. At the 2023 NET Cancer Day Symposium in Santa Monica, the event culminated in a special celebration featuring Tom’s piano concert, where he shared original pieces composed throughout his NET journey along with stories of hope and resilience. Tom’s contributions to the neuroendocrine cancer community often happened quietly, behind the scenes. He composed the music for the intro and closing of the NCF podcast, contributed his studio time for recording, and edited each podcast episode with care. During the 2023 award ceremony, he described podcast editing as “like doing a jigsaw puzzle” — a meaningful way of bringing sound, story, and purpose together. That same year, Tom received the Giovanna Joyce Imbesi Above & Beyond Award, an honor recognizing outstanding dedication to NET patient advocacy and the values of excellence, awareness, and hope. The award was especially meaningful because Giovanna, the late founder of NCF (then LACNETS), was also a composer and pianist who understood the healing and connective power of music. In accepting the award, Tom reflected that early in his diagnosis, around 2015, he had written down a list of what he hoped to do with the rest of his life. One item on that list was to “somehow serve the NET community.” Through his music, podcast work, generosity, and presence, Tom did exactly that. He served in ways both seen and unseen, offering encouragement, artistry, and connection to patients and caregivers navigating their own journeys. Tom embodied the spirit of the Above & Beyond Award through the awareness he raised, the hope he offered, and the meaningful connection he created through music. His legacy will continue to resonate throughout the neuroendocrine cancer community. Tom Bajoras and Lisa Yen at the 2023 NET Cancer Day Symposium We also hold close Lisa Yen, Tom’s wife and NCF’s Director of Programs & Outreach. Lisa has served the NET community with extraordinary compassion, expertise, and dedication, bringing both her background as a nurse practitioner and her lived experience as Tom’s caregiver to her work. Through her leadership, she has helped shape many of NCF’s patient and caregiver programs, educational resources, support groups, and community initiatives. As we remember Tom, we honor a life marked by creativity, kindness, humility, and service. We are grateful for the music he shared, the journey he offered and the love he brought into this community. In lieu of flowers, Lisa and family ask that donations in Tom’s memory may be made to the Neuroendocrine Cancer Foundation at NCF.net/donate. If you are interested in attending the Celebration of Life for Tom on July 27th in California, please contact Kavya Velagapudi at kavya.velagapudi@gmail.com. You can also join virtually at https://www.youtube.com/live/DvJuN9s7l8g. With gratitude and remembrance, The Neuroendocrine Cancer Foundation Staff & Board

We thank Jaydira Del Rivero, MD, for reviewing this blog post. In March 2025, the U.S. FDA approved a new treatment option for neuroendocrine tumors: cabozantinib. (Cabometyx® is the brand name of this medication, manufactured by Exelixis.) Although this pill has long been used to treat other cancers, it is now approved for patients 12 years and older with previously treated, advanced neuroendocrine tumors. 👉 For background on the CABINET trial and what the trial data showed, read our March 26, 2025 blogpost: Positive Results of the CABINET Trial Show Cabozantinib as a New, Effective Treatment in Advanced Neuroendocrine Tumors and watch our Nov 2025 Interview with Dr. Aman Chauhan Update on Cabozantinib. Cabozantinib is an oral, non-chemotherapy pill from the category of medications called a VEGF tyrosine kinase inhibitor (or TKI). It's a targeted therapy that works to inhibit the growth of blood vessels in the tumors and also can work to slow growth. As more patients begin taking cabozantinib, it has become one of the most frequently discussed topics in our weekly support groups. Many people want to know what to expect, how to take the medication correctly, how it may affect daily life, and what practical steps can help them feel more prepared. Below are tips and tricks gathered from firsthand patient and caregiver experience, including NET caregiver Lisa Yen’s “show and tell,” which offers practical tools she and her husband found helpful when preparing for Cabozantinib. Important: Always consult your healthcare team with any questions or concerns about your care. This information is provided solely for educational purposes to support and inform patients and caregivers. It is not intended to substitute for professional medical advice, clinical judgment, diagnosis, or treatment, nor should it replace direct discussions with your healthcare providers. Download the transcript of this video >>> Key Resources and Helpful Items 1. Order the free Cabometyx® Patient Care Kit and join the Be Connected support program The Cabometyx Patient Care Kit is available directly from the manufacturer, Exelixis and includes: Samples to help manage common side effects Educational materials on cabozantinib A treatment journal to track symptoms, blood pressure readings, and communication with your care team A patient handbook with tips and guidance Many patients find this kit reassuring and helpful to have on hand. 2. Listen to Podcast Episode 50: Spotlight on Pharmacists Pharmacists, especially oncology pharmacists, play a key role in helping patients navigate targeted oral therapies. This episode discusses: How to take cabozantinib safely What to avoid Common drug interactions Ways to manage side effects How pharmacists can support you throughout treatment Udderly Smooth® cream Cabozantinib can cause hand foot syndrome, a side effect that may lead to redness, sensitivity, or discomfort in the hands and feet. Patients often find that the over-the-counter Udderly Smooth cream: Helps moisturize dry or irritated skin Is non-greasy Works well when applied at bedtime Blood Pressure Cuff Cabozantinib can increase blood pressure, so monitoring at home is essential. Tips: Check your blood pressure at the same time each day, preferably in the morning Record each reading so your care team can identify trends Know the parameters for when to call your doctor. Your doctor may prescribe medications to manage your blood pressure. Ask your doctor who you should be reporting your blood pressure readings to and who will be the one to prescribe and manage high blood pressure. 5. Helpful Items for Nausea or Altered Taste Some people taking cabozantinib experience nausea or altered taste. The following tips and tools may help manage these symptoms: Lemon or lime Some people find adding a few drops of lemon or lime to their water helps with altered taste or nausea. Herbal inhaler Some patients find that inhaling soothing herbal scents can help ease nausea. Lozenges Products such as Organic Morning Ease by Traditional Medicinals or Tummy Drops peppermint lozenges may help soothe nausea. Nonmetal utensils Using bamboo or other non-metal utensils may help reduce metallic taste during meals, if this is one of your symptoms. Biotène® oral rinse Some patients experience dry mouth, mouth sores, or changes in taste. An alcohol-free over-the-counter rinse like Biotène can soothe mouth dryness, reduce discomfort, and make eating easier when used before meals. If nausea persists, ask your doctor about prescription anti-nausea medications. Your care team can help determine what is appropriate for you. The following guidance is adapted from patient education materials provided by the manufacturer of cabozantinib (Exelixis, maker of the FDA-approved drug Cabometyx®). For more information, visit: https://www.cabometyx.com/resources Always discuss any questions or concerns with your healthcare team before making changes or trying new strategies. How to Take Cabozantinib Swallow tablets whole. Do not crush, chew, or dissolve them Take on an empty stomach: one hour before eating or two hours after eating Take it at the same time each day. Any time of day is fine as long as it is consistent If you miss a dose and more than 12 hours have passed, skip it and take the next scheduled dose Food and Drug Interactions While taking cabozantinib, do not eat or drink grapefruit, grapefruit juice, or grapefruit-containing products because they can affect how the medication is absorbed. Inform your health care provider of all medications you take, including prescription medications, over-the-counter products, vitamins, and herbal supplements. This helps your care team identify any possible interactions and keep you safe during treatment. Monitoring Symptoms Track symptoms such as: Mouth sores Changes in taste Dry mouth Hoarseness or voice changes Skin and hair changes, such as changes in color, dry skin, rash Fatigue Digestive issues such as nausea or diarrhea Daily tracking helps your provider decide whether dose adjustments, side effect management strategies, or treatment breaks are needed. Communication Is Key Frequent communication with your healthcare team, supported by your journal or tracking system, helps ensure the treatment is safe, tolerable, and effective. Final Thoughts Starting a new medication can bring uncertainty, especially when it affects daily routines. These tips and tools have helped many people feel more prepared and empowered as they begin Cabozantinib. For more information and resources, explore our video library and podcasts. You are not alone. We are here to support you. THANKS TO NCF SPONSORS

Dear Neuroendocrine Cancer Community, Dr. Richard R.P. Warner For six decades years, the Carcinoid Cancer Foundation (CCF) has been a pillar of education, advocacy, and support for the neuroendocrine tumor (NET) community. Founded by the late Dr. Richard R.P. Warner, CCF helped shape the modern landscape of NET patient education and touched countless lives. The Neuroendocrine Cancer Foundation (NCF) now enters a new chapter as we carry forward this legacy. We have been entrusted with continuing programs and resources that have supported patients and families for decades. Serving as the successor to this 60-year foundation is both an honor and a responsibility we do not take lightly. We are grateful for the trust placed in NCF to steward this work and build upon Dr. Warner’s vision. That trust reflects a shared commitment to ensuring people affected by neuroendocrine cancer have continued access to reliable information, compassionate support, and meaningful connection. Our mission remains clear: no one facing neuroendocrine cancer should feel alone. We will continue providing trusted education, patient support, and community engagement while investing in initiatives that advance care, awareness, and quality of life. How We Will Continue This Important Work Over the past two years, NCF has worked alongside CCF to ensure continuity of support through the patient support line, the Luncheon with the Experts (LWTE) webinar series, Stories of Hope, and other educational initiatives. These programs will continue under NCF. Neuroendocrine Cancer Provider Directory Building on CCF’s “Find a Doctor” database, NCF is partnering with the Neuroendocrine Tumor Research Foundation (NETRF) to combine two specialist databases into a single, comprehensive Neuroendocrine Cancer Provider Directory. This unified, up-to-date resource will help patients and caregivers connect with experienced specialists and is planned for launch later this year. LWTE Webinars, Stories of Hope, and Support Line These cornerstone programs will continue under the NCF umbrella. We invite you to stay connected and engaged with our community: Facebook Instagram YouTube X (formerly Twitter) LinkedIn We extend our sincere gratitude to CCF for its decades of service and to CCF's CEO Keith Warner, and COO Grace Goldstein (retired in 2022), for ensuring Dr. Richard Warner’s legacy continues. We also thank you—the neuroendocrine cancer community—for your continued trust as we carry this work forward. With respect and gratitude, NCF Team Other Resources Learn more about the Neuroendocrine Cancer Foundation Sign up for our upcoming patient programs THANKS TO NCF SPONSORS

2025 was a year of meaningful progress in neuroendocrine cancer. New treatments, new clinical trial data, and expanded research efforts continue to improve care for people living with diverse neuroendocrine cancers including neuroendocrine tumor (NET), neuroendocrine carcinoma (NEC), and pheochromocytoma and paraganglioma (PPGL). Below is an overview of some of the most important developments of the year. Year-in-Review: NET and NEC Updates Download the transcript of this video >>> Dr. Udhay Grewal summarizes major advances from conferences and clinical trials across the NET and NEC landscape. Key Advances Continued progress in alpha PRRT, including completion of the ACTION 1 Actinium 225 trial. FDA approval of belzutifan for pheochromocytoma and paraganglioma. Promising results from DLL3 targeted therapies for high grade NEC. Ongoing development of tri-specific antibodies and DLL3 radioligand therapies. New Developments in Neuroendocrine Tumors (NETs) Download the transcript of this video >>> 2025 brought several promising updates for patients with well-differentiated NETs. Dr. Aman Chauhan highlights the following: Key Advances Paltusotine : A once-daily pill being studied for carcinoid syndrome. Alpha PRRT : Early activity seen with Lead-212 and Actinium-225 therapies. Combination PRRT : Triapine plus Lutetium-177 shows encouraging safety and early effectiveness. New targeted therapy : Zanzalintinib is being evaluated as a next-generation VEGF inhibitor. New Developments in Neuroendocrine Carcinoma (NEC) Download the transcript of this video >>> High-grade NEC has historically had fewer treatment options, but 2025 delivered real momentum. Dr. Aman Chauhan discusses the following: Key Advances DLL3 T-cell engagers:  Including tarlatamab and the investigational drug obrixtamig. Oncolytic virus therapy:  Seneca Valley Virus combined with immunotherapy is being studied. DLL3 radiopharmaceuticals:  New therapies under development that may bring theranostics to NEC. COMPETE Trial Results Presented at ENETS 2025 Download the transcript of this video >>> At the ENETS Congress in March 2025, NANETS President Emeritus Dr. Halfdanarson explained key results from the COMPETE phase 3 trial comparing PRRT Lu 177 DOTATOC with everolimus. He also discusses what it means for patients. Key Takeaways PRRT was more effective than everolimus in delaying tumor growth. Side effects were expected and consistent with previously known PRRT safety. Quality-of-life data are pending, but past studies suggest favorable outcomes. Everolimus remains an important option. The goal is ensuring patients receive all effective treatments over time. 2025 Highlights and Future Directions from NANETS President Dr. Jennifer Chan Download the transcript of this video >>> At the September 2025 INCA Summit in Sofia, Bulgaria, NANETS President, Dr. Jennifer Chan reflected on the progress of the past year and shared what she is most excited about for the future: Key Highlights Cabozantinib approval  Dr. Chan discussed the impact of cabozantinib’s approval for both pancreatic and extra pancreatic NETs and described how this expands treatment access for patients worldwide. Belzutifan approval for PPGL   She highlighted the approval of belzutifan as a major step forward for people with pheochromocytoma and paraganglioma. Broader research momentum  Growth in the number of physicians, scientists, and centers engaged in NET and NEC research has transformed the field. Upcoming trial readouts  Dr. Chan emphasized the importance of recently completed studies, including COMPETE, and expressed enthusiasm for ongoing alpha PRRT studies and other next generation therapies. Cabozantinib Results Highlighted at ESMO 2025 Download the transcript of this video >>> In October 2025, new subgroup data on lung and thymic NET from the CABINET study were presented at ESMO. This followed the FDA approval of cabozantinib in March 2025. Dr. Aman Chauhan explains what this means for patients: Key Takeaways Strong benefit seen in lung NETs, including typical and atypical carcinoids. Activity observed in higher grade well-differentiated NETs. An important treatment option for people who are not eligible for PRRT or somatostatin analogs. NANETS 2025: Top 12 Highlights Our Neuroendocrine Cancer Foundation podcast with Dr. Will Pegna offers an easy-to-understand review of the most important updates from the 2025 NANETS symposium. Visit the podcast page for more information and resources >>> Bridging Inequities in Neuroendocrine Cancer Care Download the transcript of this video >>> A meaningful highlight of 2025 was the growing recognition of inequities in neuroendocrine cancer care and the expanding commitment across the field to address them. Dr. Grewal, who was honored with the inaugural NANETS Diversity, Equity, and Inclusion Award, shared why this work is essential and how patients and advocates can help drive meaningful change. Key Insights Many patients seen in everyday practice do not resemble those typically enrolled in clinical trials. Racial and ethnic minority groups, as well as rural patients, often face major barriers to receiving standard of care treatment and participating in research. Recent studies highlight disparities in clinical trial enrollment and end-of-life care, including lower access to palliative care among Black patients. Researchers are using NETPRO and other datasets to better understand gaps and inform future solutions. Why This Matters Dr. Udhay Grewal emphasized that progress is meaningful only when it reaches everyone who needs it. As new therapies emerge, ensuring equitable access is essential. How Patients and Caregivers Can Help Get involved in advocacy and awareness efforts. Share your experiences to help shape research and improve care. Partner with organizations like NCF, NANETS, and ASCO to support equity-focused initiatives. Looking Ahead to 2026 We look forward to the launch of new clinical trials and the results of several important ongoing studies, including those evaluating combination PRRT strategies, multiple alpha PRRT agents, DLL3-targeted therapies, and new oral treatment options. Progress is accelerating, and as research expands, so do the treatment options and sources of hope available to patients. As our speakers emphasized, meaningful advances are happening. There is real reason to be hopeful. And together, we can continue to move the field forward.  THANKS TO OUR SPONSORS

"I was diagnosed with neuroendocrine tumors in 2022. I had never heard of this disease before, and I lived in a state without a single NET specialist. I was scared and unsure of what to do next. I am so thankful that I quickly reached out to the Neuroendocrine Cancer Foundation (NCF). One of the first NCF emails I received said, ' You are not alone. We are here to help.'  In the midst of uncertainty and fear, they offered hope . From the very beginning, NCF connected me with someone who understood this disease in a way that my friends and family simply could not. That early support helped steady me when everything felt confusing. As time went on, those first conversations grew into friendships that have stayed with me. I still look back and cannot believe how much this community has meant to me. This disease, which felt so isolating at first, has offered me one of the richest experiences of community  I’ve ever encountered. One of the most important things NCF has given me is an understanding of my disease and the confidence to take part in my own care. Those early months were filled with new tests, unfamiliar terms, and decisions that felt incredibly heavy. The education I received helped me walk into appointments prepared instead of afraid. It changed how I spoke with my doctors and how I saw myself in this process. Those early days were so full of confusion, but now I am equipped with knowledge  thanks to the countless educational resources NCF provides. Because of NCF, I no longer feel powerless in the face of this disease. I can advocate for myself and for others. I have shared my story, participated in research, been proactive in my care, and supported newly diagnosed patients with a deep sense of purpose and empowerment. None of this happens by accident. It exists because  people like me—and like you— choose to support this organization because we believe that patients deserve guidance, clarity, encouragement, and connection. Every resource I used and every moment of understanding I gained came from someone who cared enough to give. Your support is transformative in the lives of neuroendocrine cancer patients who benefit from the wide range of programs and resources NCF provides to support people living well with neuroendocrine cancer." "Your generosity makes all of this possible. In 2026, an estimated 12,000 to 23,000 people in the United States will be diagnosed with neuroendocrine cancer. You help ensure that the next person who hears a diagnosis of "neuroendocrine tumor" does not have to navigate this disease alone.  Thank you for making a difference in my life and in the lives of so many others." With Deep Gratitude,  Dusty Hurley  Donations (Up to $50,000) will be matched dollar for dollar until Dec 31, 2025. Dusty Hurley is wife to a charming Irishman; mom to two loving, fun, and bright elementary-aged daughters; and the favorite human of two fluffy, playful dogs. Her professional background includes ministry, nonprofit and government leadership, and grant writing. She enjoys spending time with friends and family…bonus points if it can be around a campfire or traveling to somewhere new. Diagnosed with a pancreatic neuroendocrine tumor (pNET) in 2022, Dusty brings faith, optimism, and determination to her roles as both patient and advocate. She’s passionate about helping others navigate NET with clarity, courage, and hope. Watch Dusty on a recent patient panel: "Living With NET: A Patient Perspective."  THANKS TO OUR SPONSORS

The NETTER-2 phase 3 trial results show Lutathera® may be offered as first-line treatment for newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs). When compared to long-acting octreotide, Lutathera® reduced the risk of disease progression or death by 72% in patients with somatostatin receptors.  “These positive results for Lutathera are practice-changing and offer new first-line treatment data for patients who have a significant unmet need. This study confirms the clinical benefit of first-line radioligand therapy (RLT) for newly diagnosed patients living with these types of advanced GEP-NETs. These findings should instill confidence among physicians in using Lutathera as a first-line treatment for patients with this life-threatening type of cancer.” — Dr. Simron Singh, NET expert, Sunnybrook Health Sciences Centre, Ontario, Canada.  Novartis Lutathera® significantly reduced risk of disease progression or death by 72% as first-line treatment for patients with advanced gastroenteropancreatic neuroendocrine tumors In the Phase III NETTER-2 trial, Lutathera plus octreotide LAR significantly extended median Progression Free Survival (PFS) to 22.8 months vs. 8.5 months with high-dose octreotide LAR in patients with newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs).  NETTER-2 is the first and only positive Phase III trial for a radioligand therapy (RLT) or PRRT in the first-line setting, demonstrating the potential of RLTs in earlier treatment lines. Novartis is investigating a broad portfolio of RLTs or PRRT in advanced cancers, in addition to GEP-NETs, including lung, prostate, breast, colon, glioblastoma and pancreatic cancers to continue reimagining medicine for patients. Read the full Novartis Press Release: https://www.novartis.com/news/media-releases/novartis-lutathera-significantly-reduced-risk-disease-progression-or-death-72-first-line-treatment-patients-advanced-gastroenteropancreatic-neuroendocrine-tumors

Every year on November 10th , people around the world unite to raise awareness, advance scientific progress, and amplify the voices of those affected by neuroendocrine cancer. This year, approximately 75 neuroendocrine cancer patients, loved ones, clinicians, and industry partners  gathered in Miami, Florida  for the Neuroendocrine Cancer Foundation World NET Cancer Day Symposium  on November 9th . Together, we shared information, connection, and hope—reminding one another that we are not alone and that empowerment begins with community. November 9th also marks the birthday of our founder and Executive Director Emeritus, Giovanna Joyce Imbesi . Giovanna often said she felt a special connection to World NET Cancer Day because her birthday came just before it. Nearly six years after her passing, we continue to honor her vision and legacy—the community she built, filled with compassion, courage, and heart. Educational Highlights Q&A Session with NET experts at the 2025 NET Cancer Day Symposium This year’s Symposium featured nine exceptional speakers , covering topics across the spectrum of NET care—from clinical trials and surgery to advocacy and survivorship: Demystifying Clinical Trials  – Taymeyah Al-Toubah , MPH, CCRP FlaNET, Medical student Role of Surgery in NETs  – Jashodeep Datta , MD, Surgical Oncologist, Sylvester Comprehensive Cancer Center Liver-Directed Therapy  – Lindsay Thorton, MD, Interventional Radiologist; Sylvester Comprehensive Cancer Center Targeted Therapies & Chemotherapy  – Udhayvir Grewal , MD, Medical Oncologist Emory University PRRT for NETs  – Boris Naraev , MD, PhD, FACP, Medical Oncologist, Tampa General Hospital Cancer Institute Managing Side Effects of Systemic Therapy  – Jason Starr , DO, Hematologist/Oncologist, Mayo Clinic Jacksonville The Latest in Managing Carcinoid Syndrome  – Jason Starr , DO, Hematologist/Oncologist, Mayo Clinic Jacksonville Role of Advocacy in Advancing Care for Neuroendocrine Cancer  – Estelamari Rodriguez, MD, MPH, Thoracic Oncologist, Sylvester Cancer Center The Future of NETs: Emerging Therapies and Clinical Trials  – Aman Chauhan, MD, Medical Oncologist, Sylvester Comprehensive Cancer Center Nutrition & Fitness in Cancer  – Tracy Crane, PhD, RDN, Sylvester Cancer Center Celebrating Community & Inspiration The NCF Team with Dusty Hurley, a NET patient & advocate and the recipient of the 2025 Above and Beyond Award. This year’s Above and Beyond Award  recognized Dusty Hurley , a pancreatic NET patient, devoted wife, and mother who has gone above and beyond to support and empower others in the NET community—sharing her story, advocating for awareness, and inspiring hope through her compassion and courage. Attendees were also treated to a 15-minute sneak peek  of “Zeal for Life,”  an upcoming documentary by storyteller Rain Bennett  that beautifully captures the power, resilience, and heart of the NET community. His work highlights how connection, advocacy, and shared purpose can transform lives and inspire change. We also continued to honor Giovanna Joyce Imbesi’s enduring legacy through music, which she believed had the power to connect and heal. Each year, we incorporate music into the Symposium as a tribute to her spirit and the harmony she brought to our community. This year, musician and composer Aramís Lorié  shared both his patient journey and his artistry during the program, and attendees enjoyed live music and mocktails at the reception—a joyful close to a meaningful day. Words of Hope from Our Speakers “The hope is there is a cure… and cure means different things to different people—it may mean living well with manageable symptoms or having no evidence of disease. Our hope is that someday we will achieve that.” — Dr. Udhayvir Grewal “Hope is definitely alive. Hope is there because science is moving faster than it has in 20 years. To move the field forward, we have to participate in and invest in clinical trials.” — Dr. Estelamari Rodriguez Keep the Momentum Going World NET Cancer Day reminds us that our voices matter—individually and together. Let’s keep raising awareness, supporting one another, and making a difference—not just today, but every day. THANKS TO OUR SPONSORS