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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

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

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…
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…
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…
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…
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 people seated on stage in discussion during the "Fireside Chat with Innovative Health Initiative" at a Children's Tumor Foundation Europe event. A screen behind them displays the event title.
Featured

Children’s Tumor Foundation Europe Leads Collective Effort in Accelerating Therapeutics and Innovation for Rare Diseases

Gathering in Brussels for a week, a diverse group of leading experts from across the…
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…
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…
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…
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…
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…

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