NF1 Awareness

10/08/2026

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Teens living with NF1: This webinar was created with you in mind.

Join us Tuesday, October 13, at 7:00 p.m. ET for A Teen’s Guide to NF1. Genetic counselor Kara Anstett, MS, CGC, will share practical information for navigating NF1 during the teen years, and we’ll introduce CTF’s new resource, Living with NF1: A Guide for Teens.

The conversation will explore school, friendships, medical appointments, becoming more independent with NF care, and the questions teens most want answered.

Register and submit your questions: https://ctf.zoom.us/webinar/register/WN_cYqbTVwnQYecqXFyw8mszA

Live captions will be provided.

10/08/2026

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10/07/2026

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09/27/2026

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Free Webinar Next Week! The Brains Behind the Diagnosis
Children with NF1 face challenges that aren't always visible — cognitive, behavioral, and emotional ones that can shape daily life just as much as the physical symptoms.
Join us for a conversation with Donald J. Bearden, PhD, ABPP-CN, FAES, a board-certified pediatric neuropsychologist and Associate Professor of Neurology at the University of Tennessee Health Science Center. As Division Chief of Psychology & Behavioral Health at Le Bonheur Children's Hospital, Dr. Bearden works to improve outcomes for kids with neurological and neurodevelopmental conditions through comprehensive assessment and innovative approaches to care.
He will share his expert insights into the challenges children with NF1 face beyond the physical aspects of the condition.
Following his talk, Patient Education Manager Annie Sukhnandan presents Advocating For Your Child, with practical guidance for parents navigating school, healthcare, and beyond.
🎟️ Free to attend — registration required.
👉 RSVP: https://us02web.zoom.us/webinar/register/WN_WEQ-orYxQj-D605Qp-H-MA

07/03/2026

Have a safe and wonderful Holiday weekend!

05/18/2026

@ 17 — Neurofibromatosis Awareness Day — we recognize the strength, resilience, and courage of the millions impacted by NF. 💙
May 17 was chosen because the NF1 gene is located on chromosome 17, making this day a powerful reminder of the science, advocacy, and community driving progress forward.
To everyone living with NF: your story matters. Your strength inspires hope. And together, we continue moving closer to better treatments, greater understanding, and one day, a cure.

AwarenessDay

04/02/2026

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📢 This study is still recruiting, particularly in the 12-15-year-old age group

We’re pleased to bring forward this research opportunity: Healx is recruiting participants age 12+ in the U.S. with NF1 and plexiform neurofibromas (PNs) for the INSPIRE-NF1 (NF119) study.

The study will evaluate whether the investigational drug HLX-1502 can shrink PNs or stop them from growing and assess its effects on quality of life and pain.

To participate, you must:
- Have a diagnosis of NF1
- Have a plexiform neurofibroma
- Be 12 years or older
- Live in the United States

Participants attend clinic visits, undergo MRI and safety evaluations, and take the study medication three times daily.

Medication is provided at no cost, and Healx will reimburse part of travel expenses to clinic sites.

To learn more, visit https://clinicaltrials.gov/study/NCT06541847