National NF patient and family gathering

The Children's Tumor Foundation's NF Forum is a national patient and family gathering hosted annually 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!

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Event Details

Event details for the next NF Forum are coming soon.

The NF Forum Experience: From an NF Dad

"I was unsure what to expect when I arrived [in Washington, D.C. in 2014 for my first NF Forum]. I came to learn about NF research and the strides made to find a cure. What I came away with was a sense of family – of a team of volunteers, of caring individuals, of medical and research professionals and, most importantly, of parents, brothers, sisters, aunts, uncles, grandparents, and friends – who are united to find a cure to end NF!"

- KEN LINKOUS, NF Dad

The NF Forum Experience: From an Adult with NF

“I attended the Children's Tumor Foundation NF Forum that was held in Austin, Texas [in 2016]. I think there is a misconception among adults with NF that we do not matter when it comes to research and clinical trials. The NF Forum proved that I was wrong. By attending the different breakout sessions, I learned a great deal of information about the research that is being conducted that not only benefits children with NF, but adults as well. I loved meeting the other NF adults that are active with CTF and the different fundraisers. But, the best part of the Forum is the hope it gave me for the future and hope for the end of NF.”

- TERA MILLECKER-WILLHELM, adult living with NF

Frequently Asked Questions

Where and when is the next NF Forum?

We are still working out the details for the 2017 event – watch this space for updates. If you’re not already, follow us on Facebook as we make announcements there about the NF Forum.

When will you host the NF Forum near me?

The NF Forum is hosted in a different city across the U.S. 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.

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