The House of Representatives Committee on Appropriations has released its draft report for the Fiscal…
Childrens Tumor FoundationJune 11, 2025
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.
CTF Knowledge Base
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Search our website for news and information about NF.
Latest News
Attention NF Researchers: New Federal Funding Opportunities Available
NF (neurofibromatosis or schwannomatosis) is now eligible for two Department of Defense (DoD) research funding…
Attention NF Researchers: New Federal Funding Opportunities Available
NF (neurofibromatosis or schwannomatosis) is now eligible for two Department of Defense (DoD) research funding…
A Rare Connection at the NF Summit
From left: Dave, Dale, Jason That’s how Dale described the moment he stood alongside David…
Kendall Reeve: A Story of Strength and Hope
When Stephanie and Matthew Reeve welcomed their daughter Kendall into the world, they sensed something…
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