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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.

2

FDA-approved drugs for NF, and more are being researched

 Koselugo (selumetinib) and Gomekli (mirdametinib) are the only FDA-approved drugs for NF1.  CTF-funded research paved the way for these approvals.

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!

47

years of funding NF research

The Children’s Tumor Foundation was founded nearly 50 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.

20,000

patients each year visit the NF Clinic Network

The NF Clinic Network (NFCN) is the first nationwide network focused on enhancing clinical care and best practices for NF treatment.

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

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

Cover of the 2024 Impact Report by Children's Tumor Foundation, featuring a blue molecular structure with the text "Accelerating Discovery, Transforming Lives.
Awareness

Children’s Tumor Foundation 2024 Impact Report

The Children’s Tumor Foundation (CTF) has released its latest impact report, detailing significant progress in…
A person with short hair, glasses, and a black jacket smiles against a dark background.
Featured

CTF CEO Annette Bakker Moderates Panel at World Orphan Drug Congress 2025

Children’s Tumor Foundation CEO Annette Bakker to speak on unleashing the life-changing potential of shelved…
A group of laboratory glassware, including beakers and flasks, is arranged on a reflective surface with a blue light in the background.
CTF in the News

How a Once-Abandoned Drug Found New Life – and Changed the Future for NF Patients

The drug mirdametinib was once shelved by Pfizer. Today, it’s Gomekli - an FDA-approved treatment…
A person with long wavy hair, wearing a black and white checkered blazer and a white shirt, against a gray background.
Awards & Grants

Young Investigator: Q&A with Sarah Morrow about NF1 and MPNST

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…
The United States Capitol building with its large dome and columns is shown from the front. An American flag waves on top, under a clear blue sky.
Advocacy

Children’s Tumor Foundation Chair Pens Message Urging Restoration of NF Research Funding

In an op-ed published in RealClearHealth, Gabriel Groisman, Chair of the Children's Tumor Foundation, calls…
Children's Tumor Foundation logo on the left and Rare Disease Day logo with February 28 date on the right.
Advocacy

From NF to the World: Rare Disease Day and the Race for Faster Treatments

This has been a February to remember! In just a few weeks, a new drug…
Child cheering beside text: "IT'S A GO! FDA approves drug for children and adults with NF1." Website: ctf.org.
NF1

IT’S A GO! NF’s NEXT BIG WIN!

Today, we make history... again! The FDA has officially approved Gomekli (mirdametinib) - the second-ever…
Cover of the 2024 Impact Report by Children's Tumor Foundation, featuring a blue molecular structure with the text "Accelerating Discovery, Transforming Lives.
Awareness

Children’s Tumor Foundation 2024 Impact Report

The Children’s Tumor Foundation (CTF) has released its latest impact report, detailing significant progress in…
A person with short hair, glasses, and a black jacket smiles against a dark background.
Featured

CTF CEO Annette Bakker Moderates Panel at World Orphan Drug Congress 2025

Children’s Tumor Foundation CEO Annette Bakker to speak on unleashing the life-changing potential of shelved…
A group of laboratory glassware, including beakers and flasks, is arranged on a reflective surface with a blue light in the background.
CTF in the News

How a Once-Abandoned Drug Found New Life – and Changed the Future for NF Patients

The drug mirdametinib was once shelved by Pfizer. Today, it’s Gomekli - an FDA-approved treatment…
A person with long wavy hair, wearing a black and white checkered blazer and a white shirt, against a gray background.
Awards & Grants

Young Investigator: Q&A with Sarah Morrow about NF1 and MPNST

The Young Investigator Award (YIA) provides two-year salary support to early-career NF researchers to help…
The United States Capitol building with its large dome and columns is shown from the front. An American flag waves on top, under a clear blue sky.
Advocacy

Children’s Tumor Foundation Chair Pens Message Urging Restoration of NF Research Funding

In an op-ed published in RealClearHealth, Gabriel Groisman, Chair of the Children's Tumor Foundation, calls…
Children's Tumor Foundation logo on the left and Rare Disease Day logo with February 28 date on the right.
Advocacy

From NF to the World: Rare Disease Day and the Race for Faster Treatments

This has been a February to remember! In just a few weeks, a new drug…
Collaborations & Partnerships

Healx Announces First Patient Dosed in Phase 2 Trial Evaluating HLX-1502 for the Treatment of NF1

Healx has dosed the first patient in its Phase 2 trial for HLX-1502 - the…
A paper airplane flies away from an envelope icon with charts, trailing a dotted line.

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