The NF Summit is a premier global gathering bringing the NF patient and caregiver community together with NF researchers, clinicians, and industry leaders. Attendees gain essential knowledge and practical tools to navigate every stage of their NF journey.
Programming will feature engaging main-stage sessions, interactive breakouts, and opportunities to learn not only from expert clinicians and researchers, but from the true NF experts: YOU.
Attendees can expect a welcoming, informative environment focused on real-world impact, shared learning, and tools you can use beyond the Summit.
To get a sense of the community-driven experience and impactful conversations the Summit delivers, we invite you to explore highlights from past NF Summit events.
Closed Meeting Closed Meeting This session is designed specifically for first-time attendees to help you navigate the summit. You will learn about the event's layout , what to expect over the coming days, and how to make the most of your experience. It is a great way to start your journey and meet other newcomers as well as CTF staff and volunteers. This session is designed specifically for first-time attendees to help you navigate the summit. You will learn about the event's layout , what to expect over the coming days, and how to make the most of your experience. It is a great way to start your journey and meet other newcomers as well as CTF staff and volunteers. Kick off your Summit experience at our Welcome Reception! This is a wonderful opportunity to mingle with fellow attendees, meet the CTF team, and enjoy light refreshments in a relaxed setting. You can also take this time to explore the Exhibit Hall, where you can visit with exhibitors and learn about the latest resources and support available to the NF community. Kick off your Summit experience at our Welcome Reception! This is a wonderful opportunity to mingle with fellow attendees, meet the CTF team, and enjoy light refreshments in a relaxed setting. You can also take this time to explore the Exhibit Hall, where you can visit with exhibitors and learn about the latest resources and support available to the NF community. The Teen Track is a dedicated space designed just for teens ages 12–17 to kick back, relax, and be themselves. It’s the perfect place to meet others who truly understand what it's like to live with NF while participating in fun activities and low-pressure sessions. Whether you're looking to share your story or just want to make new lifelong friends, this track is all about building community and having a great time together. The Teen Track is a dedicated space designed just for teens ages 12–17 to kick back, relax, and be themselves. It’s the perfect place to meet others who truly understand what it's like to live with NF while participating in fun activities and low-pressure sessions. Whether you're looking to share your story or just want to make new lifelong friends, this track is all about building community and having a great time together. While many conversations about NF1 focus on tumors, this session shifts the spotlight to the other ways NF1 can affect the body. Experts will discuss how to manage "non-tumor" health concerns such as bone health, high blood pressure, and vascular issues. You will learn practical tips for staying ahead of these common symptoms and how to coordinate with your medical team for the best overall care. It’s a great opportunity to get a fuller picture of long-term health management. While many conversations about NF1 focus on tumors, this session shifts the spotlight to the other ways NF1 can affect the body. Experts will discuss how to manage "non-tumor" health concerns such as bone health, high blood pressure, and vascular issues. You will learn practical tips for staying ahead of these common symptoms and how to coordinate with your medical team for the best overall care. It’s a great opportunity to get a fuller picture of long-term health management. Focused on the unique challenges of NF2-related schwannomatosis, this session covers the medical and surgical management of vestibular schwannomas, hearing rehabilitation and the latest technology available for hearing loss or deafness. The session aims to provide practical support, expert guidance, and open discussion about living with NF2-related schwannomatosis. Focused on the unique challenges of NF2-related schwannomatosis, this session covers the medical and surgical management of vestibular schwannomas, hearing rehabilitation and the latest technology available for hearing loss or deafness. The session aims to provide practical support, expert guidance, and open discussion about living with NF2-related schwannomatosis. In this session, researchers and clinicians share the latest progress in understanding and treating Schwannomatosis. Topics include best practices for clinical care, updates on the STARFISH clinical trial, and new research into managing pain. It is an opportunity to hear directly from experts about the future of schwannomatosis treatment and connect with others living with Schwannomatosis. In this session, researchers and clinicians share the latest progress in understanding and treating Schwannomatosis. Topics include best practices for clinical care, updates on the STARFISH clinical trial, and new research into managing pain. It is an opportunity to hear directly from experts about the future of schwannomatosis treatment and connect with others living with Schwannomatosis. Take a moment to recharge in our Hospitality Lounge, hosted by Alexion, a relaxed space open to all attendees throughout the day. Whether you want to catch up with friends, have a quiet conversation, or simply take a break between sessions, this lounge is your go-to spot to relax and reset. Take a moment to recharge in our Hospitality Lounge, hosted by Alexion, a relaxed space open to all attendees throughout the day. Whether you want to catch up with friends, have a quiet conversation, or simply take a break between sessions, this lounge is your go-to spot to relax and reset. This session provides an in-depth look at various types of tumors associated with NF1, including optic pathway gliomas, cutaneous neurofibromas, and plexiform neurofibromas. Experts in the field will present the latest research on management and treatment options for these conditions, and join an expert Q&A Panel for a time of meaningful conversation with attendees. This session provides an in-depth look at various types of tumors associated with NF1, including optic pathway gliomas, cutaneous neurofibromas, and plexiform neurofibromas. Experts in the field will present the latest research on management and treatment options for these conditions, and join an expert Q&A Panel for a time of meaningful conversation with attendees. Start your morning by celebrating the incredible individuals who go above and beyond for the NF community. This special breakfast ceremony honors our outstanding volunteers and their dedication to making NF visible through their hard work and advocacy. It is a time to come together, share inspiring stories, and show our appreciation for those who help drive our mission forward. Join us for a morning of gratitude, connection, and celebration. Start your morning by celebrating the incredible individuals who go above and beyond for the NF community. This special breakfast ceremony honors our outstanding volunteers and their dedication to making NF visible through their hard work and advocacy. It is a time to come together, share inspiring stories, and show our appreciation for those who help drive our mission forward. Join us for a morning of gratitude, connection, and celebration. The Teen Track is a dedicated space designed just for teens ages 12–17 to kick back, relax, and be themselves. It’s the perfect place to meet others who truly understand what it's like to live with NF while participating in fun activities and low-pressure sessions. Whether you're looking to share your story or just want to make new lifelong friends, this track is all about building community and having a great time together. The Teen Track is a dedicated space designed just for teens ages 12–17 to kick back, relax, and be themselves. It’s the perfect place to meet others who truly understand what it's like to live with NF while participating in fun activities and low-pressure sessions. Whether you're looking to share your story or just want to make new lifelong friends, this track is all about building community and having a great time together. Designed for families and individuals, this session explains the role of neuropsychology in managing the learning and attention challenges often seen in NF1. Experts will discuss school advocacy and how educational liaisons can help bridge the gap between medical care and the classroom. You will gain tools to better support your own growth, or the NF Hero in your life. Designed for families and individuals, this session explains the role of neuropsychology in managing the learning and attention challenges often seen in NF1. Experts will discuss school advocacy and how educational liaisons can help bridge the gap between medical care and the classroom. You will gain tools to better support your own growth, or the NF Hero in your life. Take a moment to recharge in our Hospitality Lounge, hosted by Alexion, a relaxed space open to all attendees throughout the day. Whether you want to catch up with friends, have a quiet conversation, or simply take a break between sessions, this lounge is your go-to spot to relax and reset. Take a moment to recharge in our Hospitality Lounge, hosted by Alexion, a relaxed space open to all attendees throughout the day. Whether you want to catch up with friends, have a quiet conversation, or simply take a break between sessions, this lounge is your go-to spot to relax and reset. This session addresses the practical and personal aspects of living with NF as an adult. Topics include navigating workplace rights and accommodations, as well as honest conversations about dating and relationships. It offers a supportive space to discuss the complexities of balancing life's demands with an NF diagnosis. This session addresses the practical and personal aspects of living with NF as an adult. Topics include navigating workplace rights and accommodations, as well as honest conversations about dating and relationships. It offers a supportive space to discuss the complexities of balancing life's demands with an NF diagnosis. This session tackles complex subjects such as the genetics of NF, family planning, integrative medicine, and alternative pain management tools. By providing clear information on these often-difficult topics, the session aims to empower you with the knowledge needed for future planning and self-care. This session tackles complex subjects such as the genetics of NF, family planning, integrative medicine, and alternative pain management tools. By providing clear information on these often-difficult topics, the session aims to empower you with the knowledge needed for future planning and self-care.
Agenda
9 July, 2026 09:00 am
Private Meeting
9 July, 2026 01:00 pm
Registration & Check In
9 July, 2026 01:00 pm
Peer Support Workshop
9 July, 2026 02:00 pm
Volunteer Leadership Roundtable (invite only)
9 July, 2026 04:30 pm
NF Summit 101: Your Summit Roadmap (first-time attendees)
9 July, 2026 06:00 pm
Exhibit Hall Opens: Welcome Reception
10 July, 2026 08:00 am
Breakfast
10 July, 2026 08:45 am
Opening Session
10 July, 2026 10:15 am
Break
10 July, 2026 10:30 am
Teen Track Opens
10 July, 2026 10:30 am
Caring for Common Health Issues in NF1
10 July, 2026 10:30 am
Living with NF2-related Schwannomatosis
10 July, 2026 10:30 am
Schwannomatosis: Clinical & Research Updates
10 July, 2026 10:30 am
Attendee Hospitality Lounge, sponored by Alexion
10 July, 2026 12:30 pm
Lunch
10 July, 2026 02:00 pm
OPGs, PNs, cNFs: Tumor Talk in NF1
10 July, 2026 02:00 pm
CTF Development Session
10 July, 2026 05:30 pm
Blue & Green Circle Reception (invite only)
11 July, 2026 08:00 am
Breakfast: Make NF Visible Awards
11 July, 2026 08:00 am
Plenary Session: TBD
11 July, 2026 10:15 am
Coffee Break
11 July, 2026 10:30 am
Teen Track Opens
11 July, 2026 10:30 am
Kids Grow Up: Adulting with NF
11 July, 2026 10:30 am
Understanding Learning, Thinking, and Attention in NF1: Testing and School Advocacy
11 July, 2026 10:30 am
Attendee Hospitality Lounge, sponored by Alexion
11 July, 2026 10:30 am
Adulting with NF; Work, Love & Life
11 July, 2026 12:30 pm
Lunch
11 July, 2026 02:00 pm
CTF Development Session
11 July, 2026 02:00 pm
Pathways to Wellbeing: Genetics, Family, and Integrative Medicine
11 July, 2026 06:00 pm
Coors Field Reception
