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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
• NF Summit Reception at the National Zoo

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.

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.

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.

Sponsors, interested in partnering with us? 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 NF Summit exists to bring together and empower all members of the NF community. Many in the NF community, however, cannot attend because of financial limitations. In response to this inequity, CTF created the NF Summit Scholarship Program. Over the past two years, CTF has awarded 70 scholarships with support from B the Difference and a small group of individual donors. Our dream is to be able to say YES to every scholarship applicant in 2025 and all of the years to come. Will you consider making a donation to make that dream a reality?

 $1500 - Provides one Individual Scholarship to cover travel, hotel, and registration fees for one adult.

$1800 - Provides a Family Scholarship to cover travel, hotel, and registration fees for two adults and unlimited minors in their care.

Donors to the NF Summit Scholarship Program will receive the following in appreciation of their generosity: 

An introduction, either in-person at the NF Summit, or via email to a scholarship recipient.

Your name listed on our Donor Appreciation slide and signage during the 2025 NF Summit.

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.

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