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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 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

women in lap viewing sample

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

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…
Poster for "A Different Man" featuring two men sitting side by side, one with facial disfigurement, against a dark background. Text at the bottom includes the cast and film credits.
Awareness

Bringing NF Into Focus: A Close-Up on the Film ‘A Different Man’

With the release of the film, A Different Man, directed by Aaron Schimberg and produced…
Two illustrated book covers are displayed. The left cover is titled "Talking to Your Child About NF1: A Guidebook for Parents," and the right cover is titled "Super Emerson: A Book About NF1 for Kids.
Awareness

New CTF Resources: Talking to Your Child About NF1 and Super Emerson

The Children’s Tumor Foundation is excited to introduce two new resources for families affected by…
Featured

The Children’s Tumor Foundation is an Official Partner of the TCS London Marathon

The Children’s Tumor Foundation (CTF) is excited to announce our official charity partnership with the…
A group of seven diverse people, including medical professionals, a young person in a "Born a Fighter" shirt, and others, pose together for the 2023 Children's Tumor Foundation Annual Report cover.
Awareness

Children’s Tumor Foundation 2023 Annual Report

The Children’s Tumor Foundation 2023 Annual Report highlights the year’s progress in NF research, awareness,…
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…
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…
Poster for "A Different Man" featuring two men sitting side by side, one with facial disfigurement, against a dark background. Text at the bottom includes the cast and film credits.
Awareness

Bringing NF Into Focus: A Close-Up on the Film ‘A Different Man’

With the release of the film, A Different Man, directed by Aaron Schimberg and produced…
A smiling woman with short gray hair and orange-framed glasses on her head, wearing a pink patterned scarf and a black jacket. The background shows an outdoor, wooded area.
Awareness

Reflections About Ludwine Messiaen: A Pioneer Who Advanced NF and Other Women in NF

Personal Reflections from Four of Her Female Mentees Discover more articles in the Women in…
Two illustrated book covers are displayed. The left cover is titled "Talking to Your Child About NF1: A Guidebook for Parents," and the right cover is titled "Super Emerson: A Book About NF1 for Kids.
Awareness

New CTF Resources: Talking to Your Child About NF1 and Super Emerson

The Children’s Tumor Foundation is excited to introduce two new resources for families affected by…
Featured

The Children’s Tumor Foundation is an Official Partner of the TCS London Marathon

The Children’s Tumor Foundation (CTF) is excited to announce our official charity partnership with the…
A group of seven diverse people, including medical professionals, a young person in a "Born a Fighter" shirt, and others, pose together for the 2023 Children's Tumor Foundation Annual Report cover.
Awareness

Children’s Tumor Foundation 2023 Annual Report

The Children’s Tumor Foundation 2023 Annual Report highlights the year’s progress in NF research, awareness,…

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