NF1 Awareness

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

11/20/2025

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11/18/2025

This is tomorrow….

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📅 Join us tomorrow, Wednesday, November 19, 2025, at 7:00 PM Central Time (US and Canada) for an insightful virtual event featuring Dr. John Henson, MD, Professor of Medicine, Neurology, and Neurosurgery at Augusta University.
Dr. Henson will discuss the role of genetic testing in Neurofibromatosis. He'll delve into its possible use for family planning and the advantages of preimplantation testing.
This event is **free**, but registration is required to attend. Don’t miss this opportunity to gain valuable knowledge on a significant topic!
👉 Register now to secure your spot! https://us02web.zoom.us/webinar/register/WN_ox-kaQHbTqyjGtnHM6T6KQ

10/18/2025

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Café-au-lait spots are often linked to NF1, but sometimes they mean something different. Join Dr. Eric Legius — the scientist who discovered Legius syndrome — for “Understanding Café au Lait Spots Beyond NF1: A Conversation with the Scientist Who Discovered SPRED-1”

Thursday, Nov 13, 2025 at 12:00 p.m. ET

🔗 Register here: go.ctf.org/NFknowledgewebinar

This conversation will help families better understand diagnosis, care, and the difference between NF1 and Legius syndrome. Don’t miss it!

10/18/2025

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Are you between 18–30 yrs old and ready to make a difference in your community? The NF Young Adult Leadership Program is a unique, 5-day opportunity to:
✅ Build advocacy and leadership skills
✅ Connect with peers who share your passion
✅ Speak directly with policymakers in Washington, DC

📍 When: January 5–9, 2026
📍 Where: Washington, DC
💰 Scholarships available upon request
📅 Apply by: October 25, 2025
🌐 Register here: bit.ly/LTFleadership2026

CTF is proud to share this opportunity for NF-affected young adults to raise their voices and shape the future of NF advocacy.

10/17/2025

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Today, on World NF1 Breast Cancer Awareness Day, we recognize that women with NF1 are at five times higher risk of developing breast cancer before 50. That’s why early screening can’t wait. Starting mammograms at 30 and adding breast MRI through age 50 can make all the difference.

We stand with our NF partners to raise awareness, support research, and honor everyone impacted by NF1 and breast cancer. Every voice matters, every action counts, and every life is worth protecting.

Learn more at the link in bio or go.ctf.org/breastcancer.

pennysflight
Littlest Tumor Foundation
Neurofibromatosis Midwest
Neurofibromatosis Northeast
Seventeen22 Foundation
Texas Neurofibromatosis Foundation
Childhood Tumour Trust
NF Association of Ireland
The NF Team

10/01/2025

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Breast Cancer Awareness Month reminder: Women with NF1 face higher risks. Be proactive, knowledge and early action matter.

To help, NF Midwest has put together information on how to get screened and provided the National Comprehensive Cancer Network (NCCN) guidelines.

Link in comments.

10/01/2025

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09/24/2025

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At Washington University Neurofibromatosis (NF) Center, a pioneering initiative is reshaping pediatric healthcare through the efforts of Dr. Aditi Gupta and her team at the Institute for Informatics, Data Science, and Biostatistics (I2DB). They are utilizing artificial intelligence (AI) and machine learning (ML) to assess the risk of optic pathway gliomas (OPGs) in children with neurofibromatosis type 1 (NF1). Read More: https:https://tinyurl.com/4zrza8w3

If you would like to learn more about Neurofibromatosis or find support, we invite you to sign up here: https://www.nfnetwork.org/stay-informed-signup. Join our community to access valuable resources, information, and connections that can assist you on your journey.
To make a donation, please visit: https://www.nfnetwork.org/contribute/contribute-online/.

09/22/2025

07/23/2025

Massachusetts General Hospital and Boston Children’s Hospital are hosting an upcoming online webinar for parents of children with NF1!

Navigating Neurofibromatosis: Support for the New School Year
📆 Thursday, August 7th
⏰ 7pm EST
📍 Zoom

Register Here: https://forms.office.com/r/eAVj5fnry3