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.
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Meet Our 2025 NF Ambassador: Leanna Scaglione
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