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NF affects 1 in every 2,000 births

NF refers to genetic conditions that cause tumors to grow on nerves throughout the body. NF includes all forms of neurofibromatosis and schwannomatosis and affects about 4 million people worldwide. Anyone can be born with NF, and it affects everyone differently. There is no cure yet.

1

FDA-approved Drug for NF, and more on the horizon

 Koselugo (selumetinib). is the first FDA-approved drug for NF.  CTF-funded research paved the way to this drug approval, and we are working for more drug approvals for all types of NF!

3X

the number of NF Clinical Trials in the past 10 years

There are currently 67 active clinical trials for NF – three times the number of trials than just ten years ago!

45

years of funding NF research

The Children’s Tumor Foundation was founded 45 years ago as the first grassroots organization to support patients with all types of NF.

11,000

have joined the NF Registry

The NF Registry is a secure website where people with NF can take an active role in the search for better treatments. Participating is easy and makes a difference!

20,000

patients each year visit the NF Clinic Network

The NF Clinic Network (NFCN) is the first nationwide network dedicated to improving clinical care and establishing best practices for treating individuals with NF.

Learn More about

NF1

Neurofibromatosis type 1

Learn More about

NF2-SWN

NF2-related schwannomatosis

Learn More about

SWN

Schwannomatosis

CTF Knowledge Base

Find a Doctor

Search our database for an NF specialist near you

Types of NF

Learn more about NF1, and all types of SWN, including NF2-SWN

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Share Your Story

Tell us more about your NF journey

Find an Event

Signup or donate to a CTF fundraising event

Search for a Volunteer

Search for a participant or fundraising team

Donate

Your gifts make a difference

Man at podium speaking

The NF Conference

Learn more about the largest annual gathering of NF experts

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CTF Grant Giving

View upcoming RFAs and search CTF-funded projects

test tubes

Pharma and Biotech Partners

Read about our Pharma and Biotech partnerships

What are you looking for?

Search our website for news and information about NF. 

Latest News

A person in a leather jacket smiles at the camera with their chin resting on their hand. The background features the Children's Tumor Foundation logo and website URL, ctf.org.
Featured

Give for Hope: Rozalinda’s Challenges with NF2-SWN and Her Hope for Brigatinib

Rozalinda was just 21 years old when she received life-altering news that would reshape her…
Awards & Grants

Young Investigator: Q&A with Isam Naber about identifying biomarkers for NF2-SWN hearing loss

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…
Three people smiling, with one in a wheelchair. They wear green capes. The image has a blue background with the Children's Tumor Foundation logo.
Featured

Give for the Future: Emmanuel’s Journey to Find Koselugo and NF Treatment

A Letter From Henry, Emmanuel's Father I’m writing to you today to share the hope…
Abstract image of a network of interconnected lines and nodes against a blue background with a light flare.
Collaborations & Partnerships

FDA Grants Fast Track Designation to Healx NF1 Treatment

The Children’s Tumor Foundation’s support of the NF1 programs at Healx is accelerating progress! We…
Featured

Meet Our 2025 NF Ambassador: Leanna Scaglione

On Monday, November 18, in New York City, during the Children’s Tumor Foundation annual National…
A woman in a lab coat smiling, standing in a laboratory with shelves of equipment and supplies in the background.
Awards & Grants

Young Investigator: Q&A with Alexis Stillwell about NF1 and skeletal development

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…
Graphical abstract from The New England Journal of Medicine showing the effects of Brigatinib in NF2-related Schwannomatosis, indicating a decrease in tumor volume for various target tumors.
Collaborations & Partnerships

Brigatinib Shows Promise for NF2-SWN: A Direct Result of CTF’s Synodos Initiative

A landmark study published in the New England Journal of Medicine has revealed promising results…
A person in a leather jacket smiles at the camera with their chin resting on their hand. The background features the Children's Tumor Foundation logo and website URL, ctf.org.
Featured

Give for Hope: Rozalinda’s Challenges with NF2-SWN and Her Hope for Brigatinib

Rozalinda was just 21 years old when she received life-altering news that would reshape her…
Awards & Grants

Young Investigator: Q&A with Isam Naber about identifying biomarkers for NF2-SWN hearing loss

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…
Three people smiling, with one in a wheelchair. They wear green capes. The image has a blue background with the Children's Tumor Foundation logo.
Featured

Give for the Future: Emmanuel’s Journey to Find Koselugo and NF Treatment

A Letter From Henry, Emmanuel's Father I’m writing to you today to share the hope…
Two people sit on stage with microphones at the 2024 National Gala. Large screens display the event name in a dimly lit venue filled with attendees.
Featured

2024 National Gala Recap

On Monday, November 18, 2024, the NF patient community gathered with leading philanthropists, medical experts,…
Abstract image of a network of interconnected lines and nodes against a blue background with a light flare.
Collaborations & Partnerships

FDA Grants Fast Track Designation to Healx NF1 Treatment

The Children’s Tumor Foundation’s support of the NF1 programs at Healx is accelerating progress! We…
Featured

Meet Our 2025 NF Ambassador: Leanna Scaglione

On Monday, November 18, in New York City, during the Children’s Tumor Foundation annual National…
A woman in a lab coat smiling, standing in a laboratory with shelves of equipment and supplies in the background.
Awards & Grants

Young Investigator: Q&A with Alexis Stillwell about NF1 and skeletal development

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…

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