The NF Summit brings together NF patients and families, volunteers, event organizers, researchers, clinicians, patient advocates, friends, and supporters connected to NF.

Your registration fee includes:

• Access to all NF Summit sessions

• Morning and midday meals during session days

• Thursday Welcome Dinner Reception

In response to the overwhelming desire from past NF Summit attendees, the 2025 agenda will provide not only topics presented by leaders in the NF research and clinical field but also networking opportunities, interactive workshop sessions, and opportunities for you, the NF community, to share your ideas and your NF story. All sessions will be recorded for later viewing and will have live captioning. Simultaneous Spanish interpretation will also be available.

Check back regularly for exciting updates about the agenda.

Upon the successful completion of your NF Summit registration you will receive a link to to book your lodging at our host venue with a discounted rate; our block will expire on May 27, 2025 or when all rooms have sold out, whichever comes first.

To learn more about the Omni Shoreham Hotel, which is located less than one mile from the National Zoo, please click here.

If you are interested in Sponsoring this event or would like to become an Exhibitor, please contact Barbara Gallagher at bgallagher@ctf.org.

For non-profit academic institutions wishing to exhibit at the NF Summit, please contact Kate Kelts at kkelts@ctf.org

The Children’s Tumor Foundation (CTF) is the drug discovery engine for NF. By bringing together patients, doctors, scientists, and pharma, we drive treatments, advance care, and deliver faster results for millions affected by neurofibromatosis or schwannomatosis. Our patient-first collaborative approach accelerates drug development and brings life-changing therapies to patients faster – driven by our mission to end NF.

The Annual Children's Tumor Foundation NF Summit is a unique opportunity for those affected by NF to connect with the NF community and gain a sense of belonging & empowerment. Your donation to our scholarship fund will help cover the registration and travel expenses for patients and caregivers who would otherwise be unable to attend. Your generosity will directly contribute to their education and support, allowing them to connect with experts and others who understand their journey.

Our 2025 NF Summit Medical Co-Chairs are Miriam Bornhorst, MD, and Carlos Romo, MD. Dr. Bornhorst recently joined the Comprehensive NF Clinic at Lurie Children’s Hospital after many years with Children’s National and brings decades of experience to our planning efforts. Dr. Romo is part of one of the largest comprehensive NF clinics in the country at Johns Hopkins University and has spoken at countless NF patient gatherings. 

Our committee also consists of three patient representatives: Christine Panza, Jason Gonzales, and Eunice Lee. We are excited to bring these dedicated clinicians & patient representatives to Washington, D.C., to create another unforgettable NF Summit.

For questions, please contact us at nfsummit@ctf.org