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NF affects 1 in every 2,000 births

NF refers to genetic disorders 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 approved drugs 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

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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

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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

Aerial view of residential area with text overlay "play it by ear.
Featured

CTF NF2-SWN Documentary: Play It By Ear

The Children's Tumor Foundation is proud to present Play It By Ear, a short documentary…
Featured

In Tribute: Celebrating the Legacy of Lynne Ann Courtemanche Shapiro, Co-Founder of the Children’s Tumor Foundation

It is with heavy hearts that we share the news of Lynne Ann Courtemanche Shapiro’s…
Professional portrait of a woman with curly hair wearing glasses and a blue blazer.
Featured

Children’s Tumor Foundation Welcomes Kimberly Snipes to its Board of Directors

The Children’s Tumor Foundation (CTF), a global leader in funding and driving research into all…
Child awareness foundation map awareness month to may.
Awareness

Unveiling Your Action-Packed Roadmap to May’s NF Awareness Month

We proudly present your "Map To May.” Join us as we lay out the roadmap…
A man in a blue suit sitting at a table.
Featured

CTF-Funded Research Sheds Light on Experiences of Chronic Pain in NF1

Researchers at Yale University and the National Cancer Institute published new research last month in…
A sample of dna in a lab with a pipette in front of it.
Featured

CTF-Funded Research Published in “Nature”

Important new study reveals that functional interactions between NF tumor suppressors drive Schwann cell tumor…
The logo for the children's tumor foundation.
Featured EU

CTF and NFlection Present Webinar on NFX-179 Topical Gel Results

The Children's Tumor Foundation hosted an informative webinar from NFlection Therapeutics to share results from…
Aerial view of residential area with text overlay "play it by ear.
Featured

CTF NF2-SWN Documentary: Play It By Ear

The Children's Tumor Foundation is proud to present Play It By Ear, a short documentary…
Featured

In Tribute: Celebrating the Legacy of Lynne Ann Courtemanche Shapiro, Co-Founder of the Children’s Tumor Foundation

It is with heavy hearts that we share the news of Lynne Ann Courtemanche Shapiro’s…
Professional portrait of a woman with curly hair wearing glasses and a blue blazer.
Featured

Children’s Tumor Foundation Welcomes Kimberly Snipes to its Board of Directors

The Children’s Tumor Foundation (CTF), a global leader in funding and driving research into all…
Healthcare professional in a white coat speaking with a young patient in a medical facility.
Featured

CTF Short Documentary at the New Hope Film Festival

The Children's Tumor Foundation is proud to present My Superpower and Play It By Ear,…
Child awareness foundation map awareness month to may.
Awareness

Unveiling Your Action-Packed Roadmap to May’s NF Awareness Month

We proudly present your "Map To May.” Join us as we lay out the roadmap…
A man in a blue suit sitting at a table.
Featured

CTF-Funded Research Sheds Light on Experiences of Chronic Pain in NF1

Researchers at Yale University and the National Cancer Institute published new research last month in…
A sample of dna in a lab with a pipette in front of it.
Featured

CTF-Funded Research Published in “Nature”

Important new study reveals that functional interactions between NF tumor suppressors drive Schwann cell tumor…