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LACNETS participated in INCA’s 12th annual Global NET Patient Advocate Summit in Segovia, Spain with 24 other Patient Advocacy organizations from 20 Countries around the globe.  The goal was to collaborate on spreading awareness and education of neuroendocrine cancer (neuroendocrine tumor or NETs), improving access to optimal treatments and care, advancing research and advocacy initiatives.  LACNETS attends the 12th INCA Global NET Patient Advocate Summit in Segovia, Spain on September 9-10th, 2024 In August 2022, LACNETS joined the International Neuroendocrine Cancer Alliance (INCA)  as its 32nd member. The International Neuroendocrine Cancer Alliance (INCA) is the global voice in support of patients with neuroendocrine cancer and genetic syndromes (GenNETs). INCA is an umbrella organization representing  37  patient advocacy and research groups from 29 countries around the world. LACNETS Founder Giovanna Imbesi was a past guest of INCA and dreamed of LACNETS joining INCA as a member organization to add to the global voice and reach. For the third consecutive year LACNETS attended the INCA Summit. Together with ENETS and NANETS leadership, over 30 representatives of INCA member organizations gathered to share best practices and  lessons learned. Through engaging discussions innovative ideas were formed. Attendees left inspired by the collective dedication and hopeful about the impact these concerted efforts may make on behalf of those living with neuroendocrine cancer. LACNETS shared their NET VITALS  tool as an example of how patients living with NET can connect with their healthcare providers to learn, share and communicate what is vital about their specific neuroendocrine cancer diagnosis.  INCA member organizations had the opportunity to share one project at the Summit to inspire collaboration and innovation in creating awareness, access, research and advocacy in regards to NET (or neuroendocrine neoplasm, NEN). Lisa Yen presented on NET VITALS during the member showcase.  Lisa Yen, LACNETS and Danielle Ralic, NorCal CarciNET co-moderated a breakout discussion on Clinical trials: Improving patient knowledge and understanding of clinical trials. NANETS  President, Dr. Thorvardur Halfdanarson gave a thoughtful presentation on meaningful involvement of patients in neuroendocrine cancer research. Given the increasing number of new diagnoses, there are also increasing needs and opportunities to collaborate and bring patient perspectives to the forefront of medical care. Following the Summit, Dr. Halfdanarson shared his takeaway about the importance of global patient advocacy organizations working together toward their common goal of helping those living with neuroendocrine cancer. For more about 12th INCA Global NET Patient Advocate Summit, read INCA’s blogpost: https://incalliance.org/inca-summit-2024/ TRANSCRIPT: Lisa Yen   00:00 Hi! I'm Lisa Yen. I'm the LACNETS Director of Programs and Outreach, and also the INCA Treasurer. And I'm here with Dr. Thor Halfdanarson in the beautiful town of Segovia in Spain, where we just spent the last couple days in an International Neuroendocrine Tumor Cancer Alliance. So Dr. Halfdanarson, I'd love to hear from you what you're doing here and what you've learned? Dr. Thor Halfdanarson   00:24 So yeah, I haven't really… [had] not worked with INCA in any capacity before. I've been aware of them for a long time. So, it's a wonderful international organization. So I was invited to come here and speak on behalf of NANETS on patient participation in clinical research. And it's been, I will say, an exceptionally educational meeting for me, because this is not something I do every day. Lisa Yen   00:49 Yeah, it's wonderful to have you as NANETS president, representing and collaborating. So what has that collaboration looked like for you? Dr. Thor Halfdanarson   00:57 So we, so… at NANETS, we collaborate in a variety of different forms. So we try to keep a close association with patient advocacy groups. And obviously this is very beneficial for the patient population, for the relatives and things of that nature. So I think it's just very important for the success of the mission of helping patients with neuroendocrine tumors to collaborate as closely as we can and on as many fronts as we can.  Lisa Yen   01:25 Yeah, collaboration. We like to hear that. What might it translate to, Dr. Halfdanarson?  Dr. Thor Halfdanarson   01:34 I think making connections, talking to people, literally from all around the world. Obviously, we're all fighting the same enemy, the neuroendocrine neoplasms. But just hearing different perspectives, how different countries are dealing with this and things of that nature. So more connections are always good. Lisa Yen   01:54 Wow, and especially globally.  Dr. Thor Halfdanarson   01:56 Globally, it's absolutely crucial, like I said, this is neuroendocrine tumors, or neuroendocrine tumor neoplasms, affect all of the world's population, and everywhere, the incidence is rising. We've seen that in Asia and Europe and the US. So we're all fighting the same problem.  Lisa Yen   02:13 Wow, and together, hopefully we're stronger. So what's your main takeaway from this conference? Dr. Thor Halfdanarson   02:19 So the main takeaway from this conference is that I’m full of hope that there is an incredibly strong association of patients and advocacy groups all around the world. I think we just need to connect and try to work together more for a common goal. Lisa Yen   02:42 Thank you for your collaboration. Thank you for your work to give us hope, and we look forward to seeing what that looks like in the future.  Dr. Thor Halfdanarson   02:52 It's been a pleasure. Thank you.  Lisa Yen   02:53 Thank you. THANKS TO OUR SPONSORS

On Saturday, September 21, 2024, over 50 people living with or supporting those living with neuroendocrine cancer gathered for a Regional LACNETS Educational Event in Minneapolis, Minnesota, for an afternoon of learning and connecting.   Our delightful patient panel shared their compelling insights and experiences living with NET.  They gave their thoughtful perspectives on how they initially coped with the diagnosis, weighed decisions at various crossroads and shared important lessons learned during their journey. And everyone laughed and appreciated th e practical recommendation for heated toilet seats! Dr. Philip Boudreaux, a surgical oncologist at LSU, and Dr. Chandrikha Chandrasekharan, a medical oncologist at the University of Iowa, answered various questions from our audience. They colorfully covered topics from histotripsy to nutrition for NET. Dr. Emil Lou, a medical oncologist for the University of Minnesota, gave an inclusive Overview of Treatments & Other Aspects of NETS & NECS and Dr. Thor Halfdanarson, a medical oncologist at the Mayo Clinic, spoke to the Sequencing of NET Treatments, including clinical trials.   Dr. Donna D’souza, an interventional radiologist at the University of Minnesota, Patrick McGarrah, a medical oncologist at Mayo Clinic, Dr. Ajay Prakash, a medical oncologist at the University of Minnesota, joined Dr. Boudreaux, Dr. Chandrasekharan, Dr. Halfdanarson and Dr. Lou to close the conference with a well-rounded question and answer session.  A special thank you to NANETS, who held their Regional Educational Event, for inviting us to share their conference space and expert speakers. They presented comprehensive information about neuroendocrine cancer to medical professionals. Be sure to share NANETS.net  with your doctors, so they have an opportunity to learn more about the intricacies of NET.    And we encourage you to stay connected to the local Minnesota support group, Northwood NETS . Here are some comments we have received from attendees so far:   “My compliments on the quality conference Saturday 09/21/2024 in Minneapolis.  I learned a lot and felt confident that my current treatment (watch and wait) is ok. I loved the humor and experiences shared by patients and doctors. Thank you to all who helped make that conference worth attending.”   “Thank you to everyone at LACNETS for the wonderful patient education conference in Minneapolis on Saturday.  It was the greatest! The afternoon flew by and I learned so much. It all was just excellent.”  Everything was excellent! Highly recommend to anyone to attend an in-person patient conference. We are grateful to our seven speakers: Philip Boudreaux, MD, FACS Chandrikha Chandrasekharan, MBBS Donna D’souza, MD Dr. Thor Halfdanerson, MD Dr. Emil Lou, MD, PhD, FACP Patrick McGarrah, MD Ajay Prakash, MD, PhD  And our wonderful patient panelists Rick, Jud, Dusty & Mary Beth. Here are the presentations: Dr. Emil Lou on Overview of Treatments & Other Aspects of NETS & NECS Dr. Thor Halfdanarson on Sequencing of NET Treatments  Here are two of the LACNETS Webinars mentioned during the patient panel: Novel Translational Research for Metastatic NET Patients at the NCI ' Carcinoid Heart Disease' by Dr. Allen Luis Here are additional resources referred to during the patient panel: Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs), Including Adrenocortical Carcinoma (ACC) LACNETS Blog & Video on Positive Results from the NETTER-2 Trial To find out more about upcoming in-person and virtual LACNETS Educational & Wellness Events, visit our Events Page . THANKS TO OUR SPONSORS

On November 9th, LACNETS held its 2024 NET Cancer Day Symposium in Santa Monica, California, to recognize and celebrate World NET Cancer Day, which is held annually on November 10th. Over 80 NET attendees gathered to learn from renowned physicians, sponsors, and to connect with one another. Six NET experts covered topics ranging from surgery, medical therapies, Alpha PRRT, endocrinology, and clinical trials. This year’s event focused on what patients and caregivers can do to raise awareness of neuroendocrine cancer. Stephanie Alband, INCA President and Pheo Para Alliance Executive Director, presented on “Spreading Awareness Globally: INCA’s Think NENs” campaign, highlighting INCA’s efforts to raise awareness about neuroendocrine cancer and neuroendocrine neoplasm (NEN). LACNETS Board President Donna Gavin presented the 2024 Giovanna Imbesi Above and Beyond Award to Val Tippy. Each year, the award is given to an individual for outstanding dedication to NET patient advocacy. Val has been an invaluable member of the LACNETS community contributing her time and experience to help other patients. As a NETConnect Mentor, Val is the first to offer a lending hand, listening ear, along with an open heart and mind. Although Val could not attend the event in person, her family and friends surprised her with the award during a family brunch a few weeks ago. Heather Davis, LACNETS’ Associate Director of Advocacy and Outreach, presented on “Let’s Talk About NETs: How YOU Can Spread Awareness.” She stated the attendees are raising awareness by attending the event and sharing their NET journeys. Her heartfelt remarks highlighted the collective role of patients, caregivers, NET experts and pharmaceuticals in advancing early detection by making NET more top of mind in the medical community and bridging gaps in care of NET patients. Visit https://www.lacnets.org/net-awareness for resources to help raise awareness of NETs. This memorable event gave the guests opportunities to reflect and connect with one another during a drum healing session with John Fitzgerald, a Drum Circle Facilitator, and a networking lunch hour and a post-event ice cream social. Dozens of participants' excellent questions were answered by our expert speakers. We are grateful to our speakers: Stephanie Alband, INCA & The Pheo Para Alliance Martin Auerbach, MD Jaydira Del Rivero, MD Alexandra Gangi, MD Andrew Hendifar, MD Run Yu, MD   The speaker presentations are available here: "Alpha vs Beta PRRT" - Dr. Auerbach Martin "Latest in NET Medical Therapies" - Dr. Andrew Hendifar "Future of NETs" - Dr. Jaydira Del Rivero " What to Ask Your Surgeon & How to Prepare for Surgery" - Dr. Alexandra Gangi "The Endocrine in Neuroendocrine" - Dr. Run Yu Here are some comments we have received from attendees so far: “ The speakers you assembled were great! Even more important was the opportunity to meet other zebras." "My first event and thoroughly enjoyed it." “Thanks a million for this great event. I was feeling sad about med stuff until I attended and left with a huge smile on my face and more hopeful." " The speakers had so much to offer all of us, the food was delish, and the drumming was very clever....a good choice to end a wealth of very intellectual information and bring balance back to the brain. " THANKS TO OUR SPONSORS

LACNETS was busy learning from experts and making connections at the 2024 North American Neuroendocrine Tumor Society (NANETS) Annual Multidisciplinary NET Medical Symposium in Chicago, Illinois. Every year, NET scientists and medical providers gather to discuss the latest advances in Neuroendocrine Cancer. This year's Symposium showed continued growth in the interest and engagement in the NET medical community with over 534 registrants, 23 educational sessions, and 116 research/poster presentations. This Symposium is only for medical professionals. We're pleased to collaborate with the North American Neuroendocrine Tumor Society and NET patient advocacy organizations to achieve the common goal of improving the lives of those affected by neuroendocrine cancer through education and engagement. LACNETS had the unique opportunity to participate in a panel discussion titled, "Can We Talk?" about communication challenges between patient and provider and shared health care decisions, with LACNETS Director of Programs & Outreach, Lisa Yen. The enlightening session was moderated by LACNETS Medical Advisor, Dr. Daneng Li and the panel also included LACNETS Medical Advisor, Dr. Alexandra Gangi. We were inspired by hundreds of brilliant minds collaboratively working on all aspects of Neuroendocrine Cancer. Their passion and dedication to help patients and their loved ones is palpable. There was much excitement around exchanging information and learning from the community as a whole. We witnessed the workings of an exceptional community of medical professionals willing to devote extraordinary time and efforts to move the needle forward to the understanding of and effective treatment of Neuroendocrine. Stay tuned for our annual podcast episode with Dr. Guillaume (Will) Pegna who recaps the medical findings of Symposium and how they may benefit the Neuroendocrine community today and in the future. To listen to past NANETS Symposium highlights, visit our LACNETS podcast page . Oregon Health & Science University (OHSU) Medical Oncologist/NET expert, Dr. Guillaume (Will) Pegna discusses his takeaways from the 2024 NANETS Medical Symposium  University of Iowa Scientist/Researcher and NANETS NET Symposium Program Committee Chair, Po Hien Ear, PhD, shares about NANETS and the 2024 NANETS Medical Symposium, and advances in NET research  Listen to this NETCast episode "Bridging the Gap with Patient Advocacy Groups" where Dr. Jason Starr and patient advocacy leaders in the NET community review highlights from the 2024 NANETS Annual Symposium. Lisa Yen (LACNETS), Jessica Thomas (NETRF), and Josh Mailman (NorCal CarciNET) discuss the role of patients, patient advocates, and importance of building trust between patients and healthcare providers. Special thanks to our very own Lisa Yen for sharing her NET journey as a caregiver and her dedication to helping other NET patients and caregivers live richly and fully. Images: Top Left - The LACNETS Team at the exhibit table at NANETS. Top Right and Bottom Left - Dr. Thor Halfdanarsan, Lisa Yen (LACNETS), and Jenny Yessaian (Curium) Bottom Right - NET Patient Advocates with NANETS Leadership THANKS TO OUR SPONSORS

We are pleased to announce the evolution of the LACNETS organization by introducing our new name: Neuroendocrine Cancer Foundation . This rebranding signifies the strides we have made in reaching more patients and caregivers, and also in offering more educational and support resources.  The name our LACNETS' founder Giovanna Joyce Imbesi created (Los Angeles Carcinoid Neuroendocrine Tumor Society) initially represented the regional community where it began. As our reach grew nationally and internationally, we used the acronym to reflect our intent for the NET community to learn, advocate and connect. We have now chosen a name that better represents the organization we are and the broader Neuroendocrine Cancer community we serve. Read more about our mission and history here >>> Although the Neuroendocrine Cancer Foundation will expand its reach and provide more access to educational resources, medical experts and support, our commitment to the Neuroendocrine Cancer Community remains steadfast and reaffirmed. Our aim remains the same: to serve those affected by neuroendocrine cancer through education, connection and advocacy. Our Collaboration with the Carcinoid Cancer Foundation Since 2023, we have worked closely with the Carcinoid Cancer Foundation (CCF) to provide the Support Line, 'Luncheon With The Experts' and other resources. Our collaboration with CCF will continue to strengthen this year.  Contacting Us Our team remains the same. Our new website will be NCF.net . LACNETS.org will redirect indefinitely to NCF.net . Our emails will change, but we will receive emails on our current addresses. Donations Our tax ID will remain the same as #20-0062062. The Neuroendocrine Cancer Foundation may show up as LACNETS or GeneratePossibility (our former names) when searching by our Tax ID. We accept checks made to the Neuroendocrine Cancer Foundation or LACNETS. Social Media & Communications You will see our new branding being rolled out on our website, social media, and all communications over the next few months. We appreciate your patience during this transition. If you have any questions regarding this transition, please contact us at info@ncf.net. Special thanks to the exceptional medical experts who lent their knowledge and guidance during this rebranding. We are grateful to our extraordinary patient and caregiver community who continue to inspire our work daily.  Sincerely,  The Neuroendocrine Cancer Foundation Team