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Children’s Tumor
Foundation is the
Drug Discovery Engine for NF

Pioneering more solutions and better options faster for all NF patients.

Our ImpactGive Now

New Resources: Talking to
Your Child About NF1 

These resources utilize research into
how families communicate about genetic conditions.

Learn More

Traveling with NF:
Know Before You Go

Traveling with a condition like NF can bring unique challenges,
especially when navigating airport security and boarding.

Learn More

Our Global Mission
is to End NF

Fostering collaboration to meet the needs
of those affected by NF across the world.

DonateLearn More

Children’s Tumor Foundation is the Drug Discovery Engine for NF

Pioneering more solutions and better options faster for all NF patients.

Our ImpactGive Now

New Resources: Talking to
Your Child About NF1 

These resources utilize research into
how families communicate about genetic conditions.

Learn More

Traveling with NF:
Know Before You Go

Traveling with a condition like NF can bring unique challenges,
especially when navigating airport security and boarding.

Learn More

Our Global Mission
is to End NF

Committed to meeting the needs of those affected by NF across the world.

DonateLearn More
An older man seated on a stool, flanked by two younger individuals standing, all posing for a portrait against a dark background.

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 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

Learn More

Types of NF

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

Learn More
A young boy blowing bubbles on the grass.

Share Your Story

Tell us more about your NF journey

Learn More

Find an Event

Signup or donate to a CTF fundraising event

Learn More

Search for a Volunteer

Search for a participant or fundraising team

Learn More

Donate

Your gifts make a difference

Give Now
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The NF Conference

Learn more about the largest annual gathering of NF experts

Learn More
women in lap viewing sample

CTF Grant Giving

View upcoming RFAs and search CTF-funded projects

Learn More
test tubes

Pharma and Biotech Partners

Read about our Pharma and Biotech partnerships

Learn More
View Our Resources

What are you looking for?

Search our website for news and information about NF. 

Latest News

View All News
Featured

Meet Our 2025 NF Ambassador: Leanna Scaglione

On Monday, November 18, in New York City, during the Children’s Tumor Foundation annual National…
Person sitting on a gray sofa, smiling, wearing a dark blue dress. A lamp is in the background.
Featured

Meet Our Humanitarian Awardee: Sarah Wengel

Sarah Hutchinson Wengel lives in Little Rock, Arkansas, with her husband of more than 23…
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…
A person with a braid and sunglasses on their head smiles in front of pink hydrangea flowers and greenery.
Featured

Legacy Gift: Melissa D. Skyer

The Children’s Tumor Foundation is deeply honored and grateful to receive a legacy gift from…
Awards & Grants

8 Bold Minds, $888K to Fuel the Future of NF Research

Children’s Tumor Foundation invests in Young Investigators with research projects focused on hearing loss, NF2-SWN…
Illustration of a woman with an NF1 ribbon on her shirt. Text reads, "Women with NF1 have a 5-times higher chance of developing breast cancer before turning 50." Breast Cancer Awareness Month.
Awareness

Understanding Your Breast Cancer Risk with Neurofibromatosis Type 1 (NF1) and What You Can Do About It

If you or someone you love has neurofibromatosis type 1 (NF1), it’s essential to know…
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…
Featured

Meet Our 2025 NF Ambassador: Leanna Scaglione

On Monday, November 18, in New York City, during the Children’s Tumor Foundation annual National…
Person sitting on a gray sofa, smiling, wearing a dark blue dress. A lamp is in the background.
Featured

Meet Our Humanitarian Awardee: Sarah Wengel

Sarah Hutchinson Wengel lives in Little Rock, Arkansas, with her husband of more than 23…
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…
Conference poster titled "Fueling the Drug Discovery Engine for NF" with logos of Children's Tumor Foundation and European NF Group, featuring a DNA strand and a globe.
Collaborations & Partnerships

2024 Global NF Conference Highlights

We hope you enjoy this summary of the important research presented at the Children's Tumor…
A person with a braid and sunglasses on their head smiles in front of pink hydrangea flowers and greenery.
Featured

Legacy Gift: Melissa D. Skyer

The Children’s Tumor Foundation is deeply honored and grateful to receive a legacy gift from…
Awards & Grants

8 Bold Minds, $888K to Fuel the Future of NF Research

Children’s Tumor Foundation invests in Young Investigators with research projects focused on hearing loss, NF2-SWN…
Illustration of a woman with an NF1 ribbon on her shirt. Text reads, "Women with NF1 have a 5-times higher chance of developing breast cancer before turning 50." Breast Cancer Awareness Month.
Awareness

Understanding Your Breast Cancer Risk with Neurofibromatosis Type 1 (NF1) and What You Can Do About It

If you or someone you love has neurofibromatosis type 1 (NF1), it’s essential to know…

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