The Children’s Tumor Foundation (CTF) has released its latest impact report, detailing significant progress in…
Childrens Tumor FoundationApril 23, 2025
NF affects 1 in every 2,000 births
What is NF? NF refers to a group of genetic conditions that cause tumors to grow on nerves throughout the body. NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2, or NF2. NF affects 4 million people worldwide. Anyone can be born with NF, and it impacts everyone differently.
The Children's Tumor Foundation (CTF) is the Drug Discovery Engine for NF
Everything we do is to bring treatments to patients as we work toward a cure.
For Families
Like Yours
Meet a courageous mom whose journey with her daughter’s NF diagnosis began with uncertainty—but led to hope through the Children’s Tumor Foundation (CTF). Kimberly Snipes shares how CTF became a lifeline, offering answers, support, and a community that understands. Watch her story, and discover how CTF can be a source of strength and guidance for you, too.
Connecting With You
By connecting patients, doctors, scientists, and pharma, we drive treatments, advance care, and deliver results for millions affected by neurofibromatosis or schwannomatosis.
Bringing the Best NF Care to Patients
Find a Doctor
More than 20,000 patients a year visit our NF Clinic Network, which includes more than 70 clinics across North America.
Resources
We connect patients with the education and information they need through patient brochures and educational webinars.
NF Registry
Join the thousands who have enrolled in the NF Registry, a critical tool in matching NF patients to clinical trials.
Collaborating with NF Professionals on the Best NF Research
NF Research
CTF drives vital research, scientific collaborations, and partnerships that accelerate NF research and drug development.
Drug Discovery
Everything we do is to bring treatments to patients as we work toward a cure.
Pharma and Biotech Partners
Our ongoing partnerships with pharmaceutical and biotech companies catalyze treatments for NF.
Raising Funds and Connecting NF Communities
Shine a Light Walk
Shine a Light NF Walk program brings local families and friends together to raise funds, promote awareness, and build community.
NF Endurance
Professional and amateur athletes run, bike, and swim in endurance events to raise awareness and funds for NF research.
Events
CTF hosts events all over the country both in-person and virtual for patients, families, clinicians, specialists, and researchers.
What are you looking for?
Search our website for news and information about NF.
Latest News
CTF CEO Annette Bakker Moderates Panel at World Orphan Drug Congress 2025
Children’s Tumor Foundation CEO Annette Bakker to speak on unleashing the life-changing potential of shelved…
Children’s Tumor Foundation Chair Pens Message Urging Restoration of NF Research Funding
In an op-ed published in RealClearHealth, Gabriel Groisman, Chair of the Children's Tumor Foundation, calls…
CTF CEO Annette Bakker Moderates Panel at World Orphan Drug Congress 2025
Children’s Tumor Foundation CEO Annette Bakker to speak on unleashing the life-changing potential of shelved…
How a Once-Abandoned Drug Found New Life – and Changed the Future for NF Patients
The drug mirdametinib was once shelved by Pfizer. Today, it’s Gomekli - an FDA-approved treatment…
Children’s Tumor Foundation Chair Pens Message Urging Restoration of NF Research Funding
In an op-ed published in RealClearHealth, Gabriel Groisman, Chair of the Children's Tumor Foundation, calls…
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