National NF patient and family gathering

The Children's Tumor Foundation's NF Forum is a national patient education and family gathering hosted bi-annually in collaboration with the scientific NF Conference in different cities across the United States. The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis. The NF Forum features NF experts from around the world will cover the most current information on NF including how to manage the symptoms of NF, the latest in imaging techniques and updates on treatment strategies. Participants will have opportunities throughout the sessions to ask questions and explore ways to contribute to expanding the knowledge of NF and enrolling in research. There will be fun activities, meals, social time with friends and family, and much more!

More Info

The next Forum will be held on September 19-22, 2019 at the Hyatt Regency, San Francisco. Check back soon for registration and agenda details. To partner with the Children's Tumor Foundation and support the event, please visit our sponsorship packet here.

View educational videos about NF diagnosis, management, and research from the most recent NF Forums here.

The NF Forum Experience: From an NF Mom

"Attending my first NF Forum was an experience that I am incredibly grateful to have had the opportunity to be a part of. It meant so much to get the chance to meet the most dedicated, driven, brilliant & passionate individuals, who are all working tirelessly to better my son’s future, along with so many others touched by NF. Although no story was exactly the same, we were all able to relate to each other in a way that no one else truly can. "

- HANNAH DUBY, son has NF2

The NF Forum Experience: From an Adult with NF

"The NF Forum in Atlanta this past May for patients and family was a wonderful event. It was the first forum I was able to attend since I was diagnosed with Schwannomatosis in early 2015. With over 200 patients, care givers, physicians, researchers and other NF advocates in attendance, there was someone to learn from and someone to listen throughout the weekend. I would challenge others to participate in local NF group in the coming months and plan on making the next CTF national forum event.  Not only will you learn more about NF, but you’ll have a chance to educate others and become a better NF advocate outside of the NF community for all of us."

- DALE BERG, lives with Schwannomatosis

Frequently Asked Questions

Where and when is the next NF Forum?

The next NF Forum will be held in September of 2019. Check back soon registration and agenda details.

When will you host the NF Forum near me?

The NF Forum is hosted in a different city across the U.S. In 2018, the event was held in Atlanta, Georgia. In 2014 we were in Washington, D.C.; in 2015 in Scottsdale, AZ; and in 2016 in Austin, TX. We make great efforts to visit different cities in different parts of the country.

Can I bring my family?

Yes! We encourage you to bring your spouse and children. The weekend is rich with opportunities to meet new people, learn about new NF updates, and have fun! We also have a full-day children’s program, which is a great way for your kids to meet others living with NF.

Will I be able to speak with a doctor about my own/my child’s NF?

In addition to the keynote presentations, panels and sessions dedicated to a variety of NF topics, there will be plenty of opportunities to ask questions and communicate with the NF clinicians and other specialists.

Are video recordings of presentations from past NF Forums available?

Yes! CLICK HERE to go to the Educational Videos section of our Resource Library, where you will find links to presentations from the 2015, 2016, and 2018 NF Forums.