For Teens with NF: Real Information, Real Experiences, and New Ways to Connect

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For Teens with NF: Real Information, Real Experiences, and New Ways to Connect

August 25, 2026 Featured, Featured EU, NF1

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The teen years bring more independence, new experiences, and plenty of questions. For teens living with NF, these years can also be an important time to learn more about your health, become more involved in your care, and begin speaking up for what you need at school and beyond.

The Children's Tumor Foundation is introducing a new resource and two upcoming webinars designed to give teens and their families practical information, support, and opportunities to hear from others who understand their experiences.

A New Guide Created for Teens Living with NF1

Living with NF1: A Guide for Teens is a new CTF patient resource designed to help teens better understand NF1 and feel more confident talking about their health.

Written in clear, approachable language, the guide explains why NF1 happens and how it may affect the body. It also addresses topics that matter in teens' everyday lives, including learning, school, friendships, talking about NF1 with other people, and knowing when to speak with a doctor.

The guide encourages teens to begin taking a more active role in their healthcare by asking questions, learning what is normal for their bodies, and building self-advocacy skills. It also reminds every teen living with NF1 of something important: You are not alone.

Preview the Living with NF1: A Guide for Teens Brochure

Upcoming Webinars for Teens

Growing with Confidence-School Success for Students with NF

Middle and high school can bring exciting opportunities, along with new academic, social, and emotional challenges.

On Thursday, September 10, at 7:00 p.m. ET, students, families, educators, and healthcare professionals are invited to join Growing with Confidence: School Success for Students with NF.

The webinar will be led by Sara Murray, M.Ed., Outpatient Education Coordinator for the NF Program at Children's Hospital of Philadelphia. Sara will share practical strategies for working with school teams, understanding IEPs and 504 Plans, strengthening organization and executive functioning skills, fostering self-advocacy, and supporting healthy social connections.

Teens and young adults living with NF will also share their experiences navigating middle and high school, the strategies that helped them, and the advice they would offer other students and families.

Live captions will be provided.

Register for Growing with Confidence

October 13: A Teen's Guide to NF1

On Thursday, October 13, at 7:00 p.m. ET, teens living with NF1 are invited to a special webinar created with them in mind.

During A Teen's Guide to NF1, we'll explore CTF's new resource, Living with NF1: A Guide for Teens, and discuss some of the questions and experiences that come with growing up with NF1. Attendees will hear from a featured speaker, and teens will have opportunities to ask questions, share their perspectives, and participate in the conversation.

Additional speaker information will be announced soon.

Live captions will be provided.

Registration link coming soon!

More Ways for Teens with NF to Learn and Connect

2026 NF Summit (Denver, CO)

These new resources and events are part of CTF's growing efforts to provide teens with information and opportunities created specifically for them. At the 2026 NF Summit, teens living with NF came together to meet one another, share experiences, and connect with others who understand.

Teens and families can also explore additional information and support in CTF's Resource Library, including:

• Learning with NF1, which explains how NF1 can affect learning and offers strategies to help students succeed
• NF1 for Educators, a resource families can share with teachers and other members of a student's school team
• Understanding NF2-SWN, a comic created for teens and anyone who enjoys learning through illustrated stories

And there is more to come: CTF is currently working with members of the NF community to develop a new guide for teens and young adults living with NF2-related schwannomatosis.

The teen years are an important time to learn more about yourself, build confidence, and begin speaking up for what you need. Wherever you are in that process, CTF is here with trusted information, opportunities to connect, and support for you and your family along the way.